Journal History
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Thursday, April 10, 2008 10:02 PM CDT
Today was a hard day. We went to the cemetary. 5 whole years, I can't believe it! We miss you everyday Bella but feel all the emotions on this day like it just happened! I don't know how many people check this site still- I don't update very often because I don't have every much to say!
Life with Maggie is great! Amazing! I feel so good being a mom again and I never thought I would feel this good again! But the whole in my heart and soul can never be filled- the other parts just take over and we can make it day to day. But I am glad that this day makes me think only of you, Bella. I miss you angel! Thanks to all who still check on us- we are ok!
Monday, October 22, 2007 3:11 PM CDT
Bella,
No matter how much time passes, you are never forgotten, we think of you every single day. And even though we know you are happy and we have healed as much as our hearts can heal- on your birthday I am heartbroken. I can feel you and smell you and see you so clearly- like I held you in my arms yesterday! And these days are hard but I wouldn't give up any of it beacuse of how close I feel to you! So, tomorrow when I go back to my "normal" life, please know that I still love you and Daddy and I miss you very much!
Monday, April 9, 2007 10:19 PM CDT
Bella, I miss you so much! I know you are watching over us and you can see how happy mommy and daddy are but there will always be a place in our hearts that will not heal until we see you again.
Tomorrow will be four years since I held you and sang to you. That moment when you left us I knew you would be whole and healthy but I can still feel exactly how my heart broke when I layed you down on that bed and you went to Heaven.
You were inspirational to us all- so strong and happy. Thank you for being my daughter- thank you for every moment and every memory. You made me into the woman I am today- I carry you in my heart sweet lady! I love you and Daddy loves you and everyone misses you- we are happy we have you as our angel to protect us!
Sunday, March 4, 2007 9:12 PM CST
I cannot believe how long it has been since I updated! Maggie is doing great! She is almost 13 months now and talking like mad. She hasn't been brave enough to try that first step by herself but she crawls EVERYWHERE. And she cruises around every piece of furniture we own. Life with her is so fulfilling and meaningful. I will post new pics on her blog (see below). Not much more right now- just busy parenting!!!!!!!!
Love, cathy
Sunday, October 22, 2006 11:27 AM CDT
Happy Birthday, Bella! We miss you.
Sunday, October 8, 2006 1:51 PM CDT
This weekend is Thanksgiving in Canada and I wanted to share with you a few things that I am thankful for!
I am thankful for my wonderful family. We are all healthy and very happy. Maggie is an absolute joy and we love her more than life itself.
I am very thankful for my husband and our fantastic marriage. After everything we have been through together we are tougher for it and our bond could not get any stronger!
I am thankful for my job and home and that I don't really have to go without anything that I need.
And I am very thankful that Bella is happy and healthy. I know if she lived she would have a lifetime of hurdles to overcome and a lifetime of hurdles that she would never have been able to overcome. She deserves to be well and she is and I miss her terribly but my job as a mother of a child with hurler is to be strong enough to take the pain into my hands and let her be free from it all. (hope that makes sense to you).
It feels great to have more things to be thankful for than not. The last few years have been a struggle and it wasn't always easy to see the good things in life but I know how lucky I am and I am thankful for that!
Check out the link below to see NEW pics of Maggie.
Wednesday, August 9, 2006 10:21 PM CDT
Quick update! Maggie is doing very well! She turns 6 months old on Sunday! Very hard to believe. She has two teeth and is working very hard trying to crawl! She had a great time on our vacation to the mountains but didn't like being put into the lake! Maybe next year- she does like the pool!? I added two new blogs of pictures on link below- be sure to check both of them! And be sure to check out the chubby legs- that's my girl!!!! And the one of her sleeping is how she has always slept with her hand behind her head!
Sunday, July 9, 2006 10:45 PM CDT
Hi everyone!! Sorry it has been so long since my last update! Maggie is doing really well! She is five months old this Thursday! Time is going way too fast! She continues to amaze us at how calm and happy she is. We went to visit some family in Winnipeg and she traveled in the car for 13 hours without fussing at all! We stopped every few hours and fed her and changed her and other than that she just sat and slept or cooed, looked out the window! Amazing!!
She loves trying out new sounds- this week it is a high pitched squeal! She will sit for close to an hour in her bouncy chair and do it! I love listening too her and she is also very cuddly!
I posted a few new pics on her blog (link below). Check out the chubby legs- she is quite a good eater!!! I will write more soon! Please sign the guestbook and let me know how everyone is!!
Love, Cathy
Wednesday, June 7, 2006 9:14 PM CDT
New photos on blog- GO OILERS!!!!!!!!!!
Sunday, May 28, 2006 9:50 PM CDT
Hi- I have added a link below to a new blog site that I created for Maggie- I will frequently post photos of Maggie here! I hope you like them!
Friday, May 26, 2006 1:43 PM CDT
Hi- I finally added new pictures! But I still haven't figured out how to make them fit better! Bear with me and enjoy!!
Tuesday, May 23, 2006 10:45 PM CDT
Hi- I added one photo and I will add more soon!
YEAH OILERS!!!!!!!!!!! YOU ROCK- CAN'T WAIT TO SEE STANLEY HOME SOON!!!!!!!
Monday, May 1, 2006 0:29 AM CDT
GO OILERS GO!!!!!!!!!!!!
Hello everyone! I hope you had a great easter! We did! Our church did a story on our family. They taped some footage at our house on Tuesday about Isobel and how hard we prayed that she would engraft and then how she would get out of ICU. Jake and I told the entire story- about our horrible ordeal and all the pain we endured. they showed pictures of Bella and even went to her gravesite and filmed her headstone. The service we went to had a few hundred people in it and I think everyone was crying. Most of the people that go to our church knew about Bella but had never met us or heard how our lives moved forward after her death.
When we brought Maggie out on the video and announced that we adopted her and how our lives where so happy because of her- everyone clapped and it was awesome!
Hearing Jake and I talk on video about everything was surreal. I actually cannot believe how amazing our story is. And I find it harder to imagine that I experienced everything I spoke about! It doesn't seem real and even though I lived it- I am still amazed that it actually happened to us. WOW- what a journey!!!
Anyway- I just wanted to share that with you all!
I am going to enjoy a nice glass of wine and hit the hay!
Goodnight everyone! God bless!
And I will put more pics up soon!
Thursday, April 6, 2006 6:41 PM CDT
Hi All! Things are going really well here! Maggie is very alert and engaging- she smiles back at us and watches all of us very closely now. Especially her six year old cousin Marina! She is still very easy to care for- always happy and calm! We just love having her and thank God daily for this little miracle that came into our family!
Monday is the third anniversary of Bella's death and I feel so much stronger facing it this year. I plan on bringing flowers to her grave and playing her the Wiggles CD that we used to listen to in the car- she loved it. I still miss her everyday and that will never change but as I said before I know how happy she is- healthy, free and she knows how well we are doing and that must make her happy. These three years have goneby very quickly and very slowly all at the same time. I don't know if that makes sense but part of me feels like it was a lifetime ago and another part aches like it was an hour ago.
We love you so much Bella and you will always be in our hearts and in our minds! Thank you for touching everyone around you in such a remarkable way- you are a treasure and everyone (even those who never got the honor of meeting you face-to-face) are better off having been part of your world for the short but amazing time that we got to spend with you! Words do not do justice the "glow" you left behind when you earned your perfect little angel wings in Heaven! Ma-ma and Da-da love you baby! Bye
Friday, March 3, 2006 6:50 PM CST
Sorry! Sorry! Sorry! I didn't mean to leave you hanging! Everything is wonderful! Magiie is doing very well, we are thrilled, her birthmother is happy with her decision and the adoption is being finalized! The 10 day period in which her birthmom could revoke her decision is over and we have spoken to her and she is doing very well.
Maggie is a total joy to be with.
She sleeps really well and is easily consoled if she does cry. I have friends who are jealous because she is so easy. (knock on wood!)
I hate to keep repeating myself but all I feel is elation at being a mom again! I LOVE it! And I'm darn good at it too , if I do say so myself. It feels very different because I think I was very nervous with Bella at first- it took us a while to establish a groove, so to speak. I know what I am doing now so i don't have to worry or wonder about having a newborn- I just get to enjoy it! And of course after everything we went through I am not taking one waking moment for granted!
I talk to Bella alot- ask her for her hand and support. We have no ill feelings about parenting again because we know how happy Bella must be for us and her love is felt on a daily basis. Now, instead of aching when I think about her, I feel a peace because I have Maggie and I know that our lives have come full circle and we were meant to be Bella parents (and we always will be), and now we are meant to be Maggie's mom and dad! Bella is whole and not sick and she will always be my daughter and now she gets to be Maggie's big sister!!
That's it for now- please sign the guestbook- I check it everyday!
And Karey- sorry about the nerd comment but I calls em like I sees em!!!
Friday, February 17, 2006 3:26 PM CST
Hi! We are doing really well and Maggie is lovely! I can't get enough of her and it is obvious that she knows my voice and touch already!! I added a few photos but unfortunately I am not great with the computer and they are too big to see. As soon as my computer nerd sister comes over I will have her change the file size! Sorry but keep checking in!
Love, Cathy, Jake and Maggie!
Friday, February 17, 2006 3:15 PM CST
Hello Everyone! We couldn't be happier! Maggie is doing wonderfully! She is so beautiful and her personality seems very calm and loving. She loves to snuggle and it is clear that she already knows the sound of my voice! I will update later when I have more time. But I wanted to add a few pictures of her. It feels very strange to remove Bella's photos and replace them because it is still her page. So, I will keep them up for a few weeks and then figure out (when I am not so sleep deprived!LOL!) how to have photos of both of them!
Take Care, Love Cathy
Wednesday, February 15, 2006 8:34 PM CST
Hi , This is Cathy's mom with a message from Cathy & Jake-
their little gift arrived - Monday February 13/06 - a beautiful little girl called Maggie. Both she and her birth mom are doing well and adoption papers were signed today.
Cathy and Maggie will be home tomorrow and will update further.
Love Grandma Diane
Monday, February 6, 2006 8:08 PM CST
Just found out that the baby is coming on Monday the 13th now!!!
That's NEXT Monday!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Say some prayers that everything goes well. I will update as soon as I can next week!
Love, Cathy
Thursday, January 19, 2006 10:41 PM CST
Valentine's Day Baby! We will be receiving our bundle on Tuesday, Feb 14. The birthmother is scheduled for a c-section that morning. The baby is fine but on the large size so the doctor thought a C-section would be easier on the birthmother! We are thrilled and very busy- so much to do!! I wil update when we are home safe with our new baby!
Thanks for all your prayers and please sign the guestbook- we love to hear from you!!!
Saturday, December 31, 2005 10:35 PM CST
Well Happy New Year everyone! Sorry it has been so long since my last update but things have been busy! Christmas was great!
And the new year looks to be even better! We got good news last month and I haven't updated because I was waiting until I felt really confident that it was going to happen. We will be adopting a newborn in February!!!!!!!!!!!!!
The due date is feb 18 which happens to be Jake's birthday! We are so excited we can't even begin to describe it!! We have met the birthmother several times and even went to an ultrasound with her. The baby hid any information we were seeking and we will just have to be surprised with a boy or a girl! Obviously health is much more important to us than sex. I loved having a daughter so that would be fantastic- but a boy would be very fun and different! we will see.
The mother is young and wants to make the right decision for her child. We hit it off immediatly and look forward to getting to know her better. But her decision is made and we are definately the family she has chosen. She picked us after reading about 40 other families and said she knew right away that she wanted us!
I will update with any news immediatly after receiving it!
Happy 2006 everyone!!!
Love,
Cathy, Jake and soon-to-be babe
Monday, October 24, 2005 4:19 PM CDT
Hi everyone! Sorry it has been so long since an update but life has been flying by! No news on the adoption - we have been waiting about 10 months (the average is 9-12 months!) so any time now I hope!
I am sorry I didn't sign in on Bella's birthday- I was out of town. She would have been five years old- she has now officially been in Heaven for as long as she was with us. That is very hard for me to fathom! I wish she was still here but she is so free and out of the life she had to endure and that makes me happy- total healing- I guess that's a good birthday present!
I love you so much Bella! And Da-Da and I miss you so much. I think about you all the time and the thought of your smile makes me laugh. Thank you for all of the love you gave us and watch over us and all of your hurler friends!
Thursday, June 30, 2005 8:38 PM CDT
Hello everyone! Sorry my updatetook so long. Our cruise was GREAT!!!! We loved it and Jake wants to go again in the fall! We met a really nice couple and hung out with them the whole week. They live in Calgary and so we are going to go and visit them in a few weeks!
No news on the adoption- I am only just now starting to get VERY frustrated with waiting. I know it will happen- most likely in the next six months but it is starting to feel like it will take forever. My mind says be calm- my heart is aching! Some days I feel like it won't happen because it is like, too good to be true- a happy, normal family feels too out of reach! I'm not feeling sorry for myself- well... a little bit!
Last week, to fill our family a little bit we got a puppy! He is eight weeks old and his name is Hendrix. He is a cross between a maltese, poodle and pomeranian. He won't get too big and he doesn't shed. We had two dogs that we had to give away when we had to go for Bella's transplant. When she died we didn't have the heart to drag them away from the little girl who had them for more than a year. I've missed them alot but wasn't sure we should have any more pets. We bought Hendrix spur of the moment but I haven't had any regrets. It is very nice to have a little member of the family. And we thought it would be a good idea to get a pet before a baby so that we could train the dog before we got too busy. But I have to be honest, I feel like I have a newborn- I have been up several times every night taking Hendrix outside- so I guess I should consider this "training" for myself!!!!
Take Care and please sign the guestbook!!!
Love, cathy
Wednesday, April 27, 2005 8:20 PM CDT
Hello all! Just wanted to update. Things went as well as they can when faced with the anniversary of your daughter's death. Two whole years- I can't say for sure if it seems like yesterday or if a lot of time has passed. I do know that I feel like a normal person again. And for a very long time I thought that was impossible! Jake and I both feel like normal people- different but normal!
My mother is doing well- recuperating from her surgery. And her pathology reports showed that she caught the cancer very fast and requires no chemo- we are thrilled. Our family has had it with Chemo! The word is sickening! And we received this great news two days before Bella anniversary- I'm not sure how badly I would have lost it if the news had been bad! Thank God for some good news!!!!
No news on the adoption- we have been waiting officially for four months and most families wait nine so... this may be the easiest pregnancy I've ever experienced!? My sister calls me adoptnant (the adopting mother's version of a pregnancy!) No morning sickness! Actually I feel very calm about it. I can't wait but at the same time I can wait! Hard to explain! I guess because we know how our lives will change we are just enjoying being alone together- you know, sleeping in, well sleeping period!!
We leave on May7 for a 7 night caribbean cruise out of Texas. Can't wait! It's our first cruise! I will write when we get back!
Thanks for checking in!! Please sign the guestbook!
Thursday, April 7, 2005 9:07 PM CDT
In Memoriam
October 22, 2000 ~ April 10, 2003
Two years ago God called you to a place
where you'd be safe,
Free from pain and trouble to a gentle,
loving place.
And though we knew you could not stay
for us, you are never far away.
We send you love each morning.
We always say goodnight.
And sometimes in our minds,
we hold you very tight!
Our hearts still ache with sadness,
our silent tears still flow.
For what it meant to lose you,
no one will ever know.
Your memory is our keepsake,
you are never far away.
Written for you Bella by Grandma
Tuesday, March 22, 2005 9:16 PM CST
Sorry it has been so long since my last update! Things have been very busy- time flys by! We have not received any word about the adoption and that is okay- we didn't expect things to move that fast.
Things have been very stressful. My mother had breast cancer 6 years ago and had a lumpectomy, 6 months of chemo and 3 month of radiation. She came through it all with strength and dignity.
Two weeks age we found out that her cancer was back and she immediatly went in for a mastectomy. She is doing well- trying to recover from the traumatic surgery. I must say, strength must skip a generation because I can see the same ability to persevere as I saw with Bella. My mother is a remarkable woman! And I am happy to tell you all that her surgeon informed her yesterday that the cancer was localized to a small area on her breast and she caught it early! Very good news, catching these things early on is half the battle (insert reminder for all of you to do monthly breast exams). We will know in a few weeks if they will do chemo just to be on the safe side. Because she has already had high doses of radiation this is not an option for her, so chemo would be the only choice. Please pray for her and hope that the road is at least a short one!
I will say one thing, life for our family has been anything but dull the last few years!
I pray for boredom!
Love, Cathy
Friday, February 25, 2005 8:56 AM CST
On this day, National MPS Day, we are remebering Bella and all the other children who are now angels. And also celebrating all of the other MPS heros who journey on! God Bless them all!
Sunday, February 13, 2005 8:29 PM CST
Two years ago today was the last time that we saw Bella awake. She went into the ICU at around noon and was placed on the ocsillator shortly after that. She smiled and laughed right up until that moment. Even though we knew she was scared- she still had the sparkle in her eyes that made her so special. Even when she was on oxygen and being wheeled to the OR on a bed with me she still managed to make "fishy" faces with her mouth as we went by the fishtank in the hall. She was so strong- it still amazes me!!! She never let one single funny or happy moment go by un-noticed!
Bella, baby, we miss you so much! Daddy and I spent the last hour talking about you and remembering songs and video and the funny, stupid things you used to do! Thank you for making all of those memories (even memories of horrible times) so special and happy for us. I know it was hard but when we try to think of bad times- times when you were grumpy or hard to handle we can't remember them!! We know they happened but you had so many good ones that overshadowed the bad that we can't recall clearly the unhappy ones. And that was because of your heart and your soul. And you left all of the good pieces of your soul in our hearts and our memories! Thank you for that!
Thursday, January 20, 2005 10:22 PM CST
Hi! Just a quick note. Things are going really well- we have completed the initial adoption process. Now we wait for the right birth mother to pick us. This could take any where from 3 months to 2 years but the average family waits about 9 months. I hope it happens sooner than later but it will happen as it is supposed to happen. That's it for now- I have to watch The Apprentice!!!! I will update more this coming weekend!!
Cathy
Tuesday, November 30, 2004 4:50 PM CST
Hi everyone! It seems weird to use Bella's webpage to tell you all the latest news in our life. But I know that Bella is happy for us. What am I rambling about? Jake and I have put our name on the list for adoption. We feel ready to start having more children but we are too terrified right now to get pregnant- I couldn't handle any bad news at this point. So, we attended a two day seminar last weekend at an agency called Adoption Options. It is a local agency who handles private adoptions. We will hopefully be picked by a birthmother in the next nine months to a year (but it could be shorter or longer!). The birthmother usually picks a family while she is still pregnant, so we will be adopting a child right at birth, with luck we will get to be in the delivery room with her. Imagine coming out of a delivery room with a newborn and not having any contractions!!
We are thrilled and I will keep you all posted as things progress. Bella taught us so much- most importantly: that we love being parents! I miss being a mom so badly and Jake craves the joy of being a father once again!
Please pray that things will work out as they are supposed to. Hopefully we will be blessed with a baby in the next year!
And I changed the border because this is what I picture Bella in Heaven to look like- heathly and happy! We love you Bella!
Sunday, October 24, 2004 8:52 PM CDT
NEW EMAIL ADDRESS!!!!!
My last entry was not very positive! Sorry- sometimes it just boils over! Friday actually didn't feel as bad as the anticipation of the day. We both took the day off, planning on going to the cemetary together but we both felt pretty good when we woke up and decided not to go there. We knew it would be something that would bring down our mood, so we decided on a day of retail therapy! After burning off the stripe of our credit cards we had a nice dinner out with my family! It was still a day of great sorrow but I decided to try to feel the joy that I had felt on the day I met Bella- still the happiest day of my life- always will be!
Mama and Da hope you had a good birthday with all of your angel friends Bella! We love you!
My email is not working yet- problems because we are in a new area and they haven't ran all of their lines yet so the only way to reach me is via the guestbook or my home #!
Thanks for all your wonderful messages to Bella and us! They mean alot!!!!
Wednesday, October 20, 2004 6:54 PM CDT
It has been a long time since I have updated! I guess as timegoes by I feel like I am repeating the same thing over and over. My child died, I miss her, I ache, I am trying to move on, etc. etc. etc. I hate to bore you!
I have tried to focus on the "blessing" of Bella's death. She was freed, her suffering stopped, her uncertain future was avoided. And I do feel all of those things but it doesn't ease my pain or Jake's pain or my family's pain, only Bella's pain. And although that is all I ever wanted was for her to "okay" I still feel ripped off. I feel cheated, like I had the world and someone stole it. My heart aches and I am constantly reminded of what I lost, what we lost.
Friday is Bella's birthday. She will be 2 and a 1/2, she will forever be 2 and a 1/2. I had her four years ago but she is still 2 and a 1/2. I watch other children that are in my life, watch them grow and learn and celebrate birthdays and I feel pissed. Bella had so much life and love in her but it was not to last and now I feel empty and I honestly have no idea if I will ever feel whole. How can I? I have certainly tried and some days I feel less empty but I have not and I will not ever feel full again.
Aren't you glad you stopped by here to listen to me cry! I am sorry but I feel like anniversaries should start getting easier, maybe last year i was too numb to feel the pain of her birthday but this week has been awful- I don't want to face another birthday party with my headstone at the cemetary.
Sunday, September 19, 2004 4:58 PM CDT
I was going to write today and say how excieted I was to finally have the internet but its been a bad day. I woke up feeling horrible, as my first thought was that today it has been three years since Bella was diagnosed with Hurler syndrome.
Then, my sister-in-law and brother-in-law (Jake's brother) were pulling into our driveway to have a quick coffe with us when their daughter phoned and said that her baby just died. His name was Danten, he was three months old and had been diagnosed with Down syndrome a few weeks ago. He went into the hospital last night with some breathing complication, he had lots of breathing issues and an hour ago, he stopped breathing and they could resusitate him.
I don't know what to say- what is this life all about?
Sunday, August 15, 2004 10:59 PM CDT
Hi all! We just got back last night froma wonderful holiday! We went with my family (cause living with them just wasn't close enough quarters lol!) to Christina Lake, British Columbia. Oh Ma God! It was beautiful! It is in the Okanagan and is said to be the warmest tree lined lake in North America. It is a crystal clear lake surrounded by mountains and trees. And the water was 20-23 degrees celcius (sorry people in the states don't know the conversion! but that means warm!) We rented a little cabin with a kitchen and a couple of bedrooms- it was great. We rented a pontoon boat and went tubing and swimming in the middle of the lake- it is roughly 18 miles long so it is also quite deep. My neice Marina, who just turned 5 loved the boat! And just having completed the Floating Frogs swim class was delighted to be in the water, lake or pool, didn't matter!
I don't write about Marina as often as I should- she is and has always been a special girl in my life. I don't think I would have been able to move on after Bella's death as well as I have without her- she is the funniest, smartest, most sweet child and I adore spending time with her- so does Jake. She loved Bella and we often talk of how much we miss her. A few weeks ago, I took her out for lunch and the restaurant had a little children's area right next to our table. We were almost finished our meal when "The Wiggles" came on tv. They were Bella's true love and no one in my family can bear to hear or see them because they were so significant to Bella. Marina knew this and said, "Oh No Auntie, that show is on!" I told her that it was okay because they didn't make me that sad any more because they made Bella so happy and I was starting to be alright with the memories. She looked at me with a puzzled expression and finished eating her lunch. Then she looked at me and with disgust asked, "but your not happy that Bella is dead, are you?" She must have thought I was heartless!
So being away was great- it was honestly the first time in about 2 years that I could see peace and joy in my husband's face for a long period of time. Then we came home! LOL!
Just kidding it was nice to come home too! While we were out (haHa)our cabinets were put in, the painting was done and the tile was started. We should be in by the end of the month! Yeah!
Bye for now and thanks for checking in!
Wednesday, July 28, 2004 1:18 PM CDT
Hi everyone! Did ya miss me? Things have been crazy but are starting to level out. We are at my parents- thank God we get along so well or this would be a lot harder! Our new home should be ready aroung the 20th of August. It is really staring to come together and I look forward to going there every evening to see the progression.
My email is not working as my service has been temporarily cut off. When we move I may be getting a new address but I'll let you know. I must have been placed on alot of mailing lists and was recieving an average of 80-100 spam messages a day. How annoying! So if you need to reach me sign the guestbook.
I am amazed by how strongly I miss Bella- somedays are harder than others but I feel a lot lighter after moving from our old house- too many emotional attachments there! I really feel good about our decision to start over in a new home. It was a bittersweet goodbye to 100 Dunfield! Like a chapter closing- a long hard chapter that brought me to the depths of sadness, anger, joy, love, hate, etc. I need to be rid of that in order to move on- I still feel all of those emotions on an hourly basis (lol) but they are not as dominant!
Anyway have a great summer and keep those guestbook entries acomin'!
Love, Cathy
PS Tomorrow is my birthday- 27 Blech!!
Saturday, July 3, 2004 5:46 PM CDT
Hi everyone! thanks for signing the guestbook and if you didn't- DO! i love finding out who my "audience" is!
Anyway- we are in the process of moving in with my parents (possession dates do not match!) and have been computerless for a few days. I should be back next week!
Love, Cathy
Monday, June 14, 2004 5:14 PM CDT
On April 30,2003 ERT was approved by the FDA in the states for use in MPS1 patients. Health Canada just approved it on June 7 of this year! Great news which will offer alot of hope to alot of children. But I wish it had not taken them so long to approve it here. How many children missed out on the opportunity to benefit from ERT or how many were delayed by almost fourteen months longer than kids in the US? We all know how long fourteen months is in the life span of a child with Hurler!!!
Congratulations to all of the Canadian MPS1 families who will begin their journey of trying to give their loved ones a better life- my prayers are with you all!
Love, Cathy
PS PLEASE SIGN THE GUESTBOOK- I LOVE KNOWING WHOSE STILL READING MY PAGE!!!!
Thursday, June 10, 2004 1:51 PM CDT
WE SOLD OUR HOUSE TODAY!!!!!!!
Wednesday, May 26, 2004 12:41 AM CDT
I sometimes can't believe it and sometimes hate to say it because it feels like my life should have ended when Bella's did, but my life is going on. It has been one year, one month and sixteen days, or 411 days since I had to get into my car and leave my daughter's body in another city. 411 days is not very long when you think of it. But somehow it has been long enough for me to go through each day without her and not feel like dying myself. I love her so much and not a second goes by without my brian remebering her and my heart missing her. And I can honestly say that I am happy to be moving forward. I have this love to continue to feel for myself and my husband and my family.
Moving past something like this is a strange journey filled with every emotion possibly known to man and I have felt deep, deep love, anger, sadness- you name it! I have felt all of these feelings at a heightened awareness- that's what losing a loved one brings- all the feelings are magnified and you feel like you are losing your mind. And then your life starts to regain normalicy and it is weird, scary, happy and sort of sad!
Thanks Bella, for this peace I am begining to feel- I know you put it in my heart!
Sunday, May 9, 2004
Sunday, May 9, 2004
Little Niki died today www.caringbridge.org/il/niki. Her heart stopped early this morning. Our thoughts and prayers go out to her family. I've said it before and I'll say it again- Heaven keeps taking the best kids. I have no answers to the question- Why?
Bella must have been showing Niki around- she didn't come to me last night!
Saturday, May 8, 2004 2:52 PM CDT
Hi Bella, I know you'll be thinking of me tomorrow. You'll be in my heart and my thoughts, as you are everyday. Could you visit me tonight in my dreams? That would be the best present!
Love, MaMa
Thursday, April 22, 2004 6:35 PM CDT
Please pray for Niki www.caringbridge.org/il/niki
She's just out of her second transplant for Hurler and got placed on a vent the other day and is having other complications. Pray for her and her family. We have seen kiddies this sick get better!!! Stop by her site and sign her guestbook please! Thank-you.
And thanks for everyone's support over the last few weeks- it's been greatly appreciated and I'm feeling better. My new house is getting shingled and drywalled next week and we are having a blast picking out floors, paint, cabinets, etc.
We are having an open house this weekend- pray this house sells fast!
Thanks and sign the guestbook- it makes my day to read it!!!
Thursday, April 15, 2004 9:46 AM CDT
I was thinking the other day that I have said things over the past two or so years that are etched in brain as turning points in my life and more importantly Bella's life. I remember each and every day that I made these statements, where I was, what I was wearing, who was with me, and exactly how it felt to say them.
On October 22, 2000 I said, "I have a healthy daughter!"
On September 19, 2001- "My daughter has a terminal disorder"
Same day, I said, "My daughter needs a bone marrow transplant."
On July 17, "The first transplant failed- we have to try again."
Where these words really coming out of my mouth?
On November 26, 2002 I said, "Bella is 100% engrafted- we can go back to a normal life- we saved her, she is going to live!"
On February 13 2003, "My daughter is on a ventilator in the ICU. She has a 10% chance of surviving."
And of course, April 10, 2003 "My daughter is dead."
And the most unbelievable one, the one that I still have trouble believing? On April 15,2003 (one year ago today) I said, "I just went to my Bella's funeral and then I buried my daughter."
I can say each and every one of these statements and I still don't believe any of the things I've said. Why did I have to say them? Why can't I take them back?
Friday, April 9, 2004 8:23 PM CDT
Grandma wrote this poem for you Bella. It is exactly what I want to say.
One year ago God called you to a place
where you'd be safe,
Free from pain and trouble to a gentle,
loving place.
And though we knew you could not stay
for us, you are never far away.
We send you love each morning.
We always say goodnight.
And sometimes in our minds,
we hold you very tight!
Our hearts still ache with sadness,
our silent tears still flow.
For what it meant to lose you,
no one will ever know.
Your memory is our keepsake,
you are never far away.
Wednesday, March 31, 2004 12:04 AM CST
Hi- just a quick update. Jake and I went to see another play and I am happy to report no one died in it, especially no one named Isobel!
Jake and I are in the process of building a new home! Jake is a home builder and built the home we are in now. It was supposed to be our dream home. And we planned it out for years, making sure everything was how we wanted it because we expected to stay here for 20-30 years. The day the floor was built on this house was the day that Bella was diagnosed and our dream home turned into a nightmare. Between doctor's appointments, researching Hurler and BMT's we chose flooring, cabinets, lighting, etc. I hated everything about building this home and cried the entire time I unpacked. We wanted it to be our future but when your child is diagnosed with a terminal illness- you feel like you have no future. All you have is that day and it takes everything out of you trying to get through it.
Because we were in Calgary for so many months, this home doesn't have a lot of memories of Bella in it. The hospital was her home and the RMH. So, we don't feel constantly bombarded of reminders of Bella but we feel like moving will help us to move on. This house feels symbolic of the disappointing turn our lives took on that day. The floor is like our foundation of loss. The house is beautiful (in case any potential buyers are reading this!! HA) but to us it isn't a place for us to set roots.
I wanted to write this today because the floor of our new home was just completed! And walking on it feels hopeful. this floor never felt like that.
Building a new home will hopefully allow us to feel a new beginning. We aren't leaving Bella here- she is permanantly in our hearts and will remain there even if we were to move to China!
So, here's to our new start as Jake and Cathy- the future is beginning.
Love, Cathy
Ps. I still love getting guestbook entries, and I see the # of visitors increase daily, so sign in and let me know who still comes here! Thank you.
And please pray for Niki www.caringbridge.org/il/niki
She just went through transplant but failed to engraft and needs a second transplant. Send her parents your love and sign their guestbook!
Monday, March 8, 2004 10:05 PM CST
I just wanted to tell everyone a story. A few evenings ago Jake and I decided to go out on a date- we hadn't really done anything for Valentines Day because we were feeling down and Jake had his birthday last month as well, so a date sounded in order. We went to a dinner theater and had a wonderful meal, some drinks, enjoyed each others company- it felt very normal, very needed.
I knew the play was going to be a comedy- a murder mystery that took place in an apartment above a hair salon- I'm a hairstylist so this was fitting. Anyway, lights went down, play began. And as our luck would have it the victim in the play's name was Isobel- so the first few moments of the place consisted of people running around, screaming "She's dead- Isobel's dead. I saw her body, she's dead... etc, etc."
I didn't know if I should laugh or cry or leave or what. Jake and I looked at each other giving our usual "only in our lives would this happen" type look.
We stayed and after the initial shock wore off, we enjoyed the play. They only mentioned her name sporatically throughout the rest of the play and I did my best to picture an old woman named Isobel and I pictured the spelling different. It helped.
I just wanted to share this with you- you have to laugh, right? Anyway, we are going to another play in two weeks and I checked- no Isobel's are in the script at all!!!
Sunday, February 29, 2004 5:33 PM CST
I just wanted to ask everyone to say a prayer for Carter's family tomorrow- it will mark the one year anniversary of Carter earning his golden angel wings. We are fast approaching Bella's death date and so I can imagine that tomorrow will be impossibly hard for Bernie and Kristy. Please stop by and send them your thoughts. www.caringbridge.org/canada/carter
Carter- your life touched a lot of people- I am one of them. I checked on you everyday of your transplant and prayed for your healing. And I know that for the past year you have checked on us- thank you. Please take care of Bella and all of your other angel friends.
Love, Cathy
Friday, February 13, 2004 12:12 AM CST
One year ago today I carried Bella into the OR for her broncoscopy. She had been having difficulty breathing and the test was to determine what was going on with her lungs. She was crying because she was scared- there were so many people around and she had been to the OR many times and she must have sensed my fear. I was nervous- any mother of a Hurler child knows the danger that anesthetic can pose.
But I never thought for a second that once she went under and I layed her on the table that it would be the last time that I would see her awake.
I guess if I had know I would have never put her down.
I love you Bella and I miss you terribly. Please continue to watch over us and keep us safe.
Thursday, February 5, 2004 4:17 PM CST
Conor Ford got his golden angel wings today. Heaven keeps taking amazing kids. www.caringbridge.org/canada/conorford
Monday, February 2, 2004 5:17 PM CST
Hi It's been a while since I updated! I promise I will do a proper update soon. This is a request for prayer and support for the Ford family. Little Conor is a boy who we lived with at the RMH in Calgary. He was just put on a vent in ICU- stop by his page and sign the guestbook for his parents www.caringbridge.org/canada/conorford They need your prayers- they have been through so much and have fought so hard. Conor is such a fighter and will bounce back from this- pray that his body gets some rest while ventilated and that he he will be playing with his brother Aiden shortly!!
Thanks so much! Love, Cathy
Saturday, January 3, 2004 6:30 PM CST
Just a quick note to thank everyone for your messages of support and love during the holiday season- it really means alot and helps lift my spirits!
Please pray for Conor. He is the little boy who we met in Calgary- he has leukemia and is starting his second BMT work up. His baby brother Aiden is the donor- these are the two sweetest boys you've ever seen! His parents are in need of support- I know- starting the second transplant is way scarier than starting the first- you already know how hard it is!! And it can be terrifying! Drop by and give him and his family your encouragement!www.caringbridge.org/canada/conorford
Thanks and Happy 2004- it is going to be a good year (fingers crossed, rubbing lucky rabbit's foot, wearing lucky underwear and praying!!!!!)
Sunday, December 21, 2003 9:49 PM CST
Hi Everyone! Not much new to report. Jake and I are trying to make it through the Christmas Season. I never realized how long the season really is! I assumed that The 24-26 would be difficult. But really since the end of November we have beeen bombarded with constant reminders of the holiday and all it represents (family, love, and most of all children!) I usually love Christmas so hopefully next year we will find it in our hearts to celebrate. For now, we are doing as little as possible. I did not put up a tree or decorate like I usually do. I will not go to church or sing carols. I just bought a few gifts. I do want to try and make it a special Christmas Day for my niece, Marina. She was very close to Bella and still asks me questions about her all the time. We talk about how Bella called her Rina and used to hug her and laugh at her! They loved each other. Marina really suffered too by losing her only cousin(and they were more like sisters than cousins). So, I think that Marina deserves a fun Christmas and I will do my best to do that for her.
I do wish you all a happy holiday! And I hope that everyone with children and family will cherish them and be thankful for every moment they have together. And for those of you have angels up in heaven I hope the holidays have some peace and happiness and joy.
Merry Christmas!
Thursday, November 27, 2003 10:11 AM CST
Update: Just after I wrote about Max- I learnt of another child who passed away on Tuesday. I'm sure alot of you have heard of and been following Tommy Bennett's story. Tommy has Sanfillipo(sp?) Syndrome and he had three transplants. His other two siblings are also affected but were too old to have transplants. I can't imagine his parents pain. Tommy fought a tremendous battle but now rests with the angels. Their webpage is www.caringbridge.org/ca/bennettboys
Mighty-Max became a Mighty angel yesterday. I am so glad that he has been set free from Hurler, ventilators, drugs and hospitals. But my hope was that he would be spared all of this and be able to remain on earth with his family.
I can picture his arrival into Heaven. Bella, Carter, Reese and all of his friends must have met him there and showed him around. I can see them all playing, with healthy bodies and no more suffering.
I don't have any answers. I still wish that I had never heard of Hurler Syndrome or MPS. On the other hand, if I hadn't I would never been touched by the lives of so many beautiful souls.
To all of the sweet angels in Heaven who have lost their battles with these dreaded diseases, thanks for touching my heart. I miss you all.
Please visit Mighty-Max.com and give Margaret, Mike and Grace some support. I know it won't bring their angel back but it will help them alot to know how many people Max's short life touched.
Monday, November 17, 2003 9:13 PM CST
Hi all! A few quick updates:
NEW- Tuesday evening****Max has had a rough day- please pray for his family! www.mighty-max.com
I also came across another website- I'm sure most of you know them but if not stop by caringbridge.org/page/tommyries and read their story and sign their guestbook. Their oldest child, Tommy has been transplanted for Hurler and now his sister is starting her chemo for her transplant. Kaitlyn's parents were told during pregnancy that she was not affected but it turns out she does have Hurler- They must be so shocked! Let's help them get through this time around with our love and prayers!
And another Hurler baby became an angel last week- Mattie earned her wings on Thursday. Her parents have not updated her journal but the address is caringbridge.org/nc/mattie_east
I cleaned out Isobel's room today. It took me 7 months to get the balls to do it! It was very hard but felt like the right time. I am donating all of her toys, clothes, furniture, etc. to a shelter in Edmonton. I think a lot of less fortunate families will benefit from it and hopefully have a better Christmas because of Bella! I managed to get the things that we want to keep down to three boxes. Alot of her toys had never even been taken out their packaging- anyone who has ever had a sick child understands how many new toys they can receive!!
Take care and please sign my guestbook- I look forward to hearing from everyone!!
Love, Cathy
Friday, November 7, 2003 6:01 PM CST
I am not crazy and I hope this makes sense-
I have been looking at other Hurler kid's photo albums today and I kept thinking Oh, my God he/she looks exactly like Bella. It seemed that every child looked more and more like her than the last. Then I looked at Bella's pictures (which I will try to change asap) and thought, No she looks different from so and so. Sure, all Hurler children have similar features, their eyes, noses, hands, etc. but they all have something about them that sets them apart from the others. They look alike but different- you know? So why do all of these kids remind me so strongly of Bella? And it stuck me today was that they all have something special about them- a spirit or aura surrounding them. They are so beautiful and kind and sweet and loving and you can see it in their eyes. It is unlike any other children. And I think they must be angels- sent to us to teach us about strength, kindness and love. I sound hokey but it's true! Hurler babies are different from other children and from each other but bonded by a magical persona that makes every one they meet fall in love with them!
I have been feeling so down this month, finding it hard to deal with losing Bella. But today I feel like a "chosen one". I got to be the most special person in the most special girl's life- I wish it could have been for longer but I will always cherish my role and my relationship with Bella. Look into the eyes of the children with Hurler's and tell me I'm wrong!!
Enough babbling Cathy! On another note, Max is improving but still needs prayers mighty-max.com please send his family some encouragement! And please pray for Mattie I just learned of her through Reese's site- she is beautiful and is having a tough time www.caringbridge.org/nc/mattie_east
Take Care! Love, Cathy
Sunday, October 26, 2003 7:38 PM CST
Just a quick note- we made it through Bella's birthday (which I knew we would). It was very hard but we tried to make it a day of rememberance and not of sadness. It turned out to be both! I went and visited her grave site and saw her headstone for the first time. It is beautiful but a site I never thought I'd need to see. No parent should ever see their child's name on a grave marker.
Then Jake and I looked at photos of her. We cried the whole time but it was nice remembering the things she used to do- I forgot alot of her crazy expressions! She was a funny kid and I laughed through my tears as I saw her being goofy for the camera. Even as a little baby she seemed to know that the camera was around!
We are trying to take comfort in her death. We know that without a transplant Bella would have died from Hurler Syndrome. And she would have suffered. And she would have suffered from the complications that plagued her in ICU. Either way the battle was unfair and I'm glad she is in Heaven and she is whole- no worries of enzymes or platelets or white blood cells or fevers! She is free!
My whole reason for updating wasn't to ramble on but sometimes I get carried away! I wanted to ask for your prayers tonight for Max- he is having a rough time and needs a miracle. He can still come out of this okay- others have been there and come out fine! Hurler's kids especially are tough! Please send his parents words of encouragement www.mighty-max.com And please pray for little Sophie in the UK- her heart actually stopped the other day and now she is ventilated. But hopefully coming off the vent today! www.melroseroad.co.uk Please send them some support too!
Just to clarify this update- I'm not wanting to send the message that Hurler's children are better off if they die- I know that a successful transplant can be the start of a great future. I was simply talking about Bella and each situation is different. I hope this makes sense!
Wednesday, October 22, 2003 10:43 AM CDT
Three years ago today I gave birth to a beautiful baby girl. I loved the idea of her while I was pregnant but nothing can compare to love I felt when I first layed eyes on her, first held her, first kissed her.
Isobel's first birthday came a few weeks after she was diagnosed and we had every one we knew over for presents, games and gifts. Bella had a ball- she colored, opened gifts, played with her friends and of course ate a huge piece of cake with her bare hands, covering herself and a 4ft radius around her with chocolate icing! It was wonderful! But all of the adults there, my friends and family and Jake and I wondered silently how many parties we would have like this one for Isobel.
Isobel's second birthday was a few weeks after her second transplant. We were in the hospital and she was showing signs of GVHD. She was very tired and sick and after watching me unwrap her presents and singing a few songs, she slept the remainder of the day. I just layed beside her, crying, thinking how she was getting ripped off and solidly believing that next year would be the birthday to end all birthday's.
I imagined that today would be the start of a new engrafted life; off drugs, out of hospital, complete with new enzyme! I pictured all of her friends celebrating with us the one-year anniversary of a successful tranplant and the three year anniversary of the day that she entered this world.
Well, I was wrong. Today, instead of seeing Bella blow out her candles and unwrap her gifts and play with her friends, I will be going, for the first time, to see her newly installed grave marker.
Mommy and Daddy love you Bella! Have a happy birthday, sweetie. We miss you.
Tuesday, October 7, 2003 10:41 AM CDT
I'm sure most of you who check Isobel's website have also been following Noah's site www.caringbridge.org/hi/noah. I just learned of his death. I just wanted to write and say how devastated I am for Noah's family. I know how many people prayed that this poor baby would stop suffering. I only wish his suffering could have ended and he could have stayed with his parents. I don't know of any other child who single-handedly touched so many people at once. Life is cruel and I don't have the answers but I know that he is at peace now and he has joined so many other wonderful angels, including my sweet angel.
I miss you baby.
Tuesday, September 30, 2003 8:56 PM CDT
Hi All! We are back from a very nice holiday! We had a great weather (except for the last two days but they were not too bad- still nicer than at home!!) and we got some rest and had some fun.
It had it's moments, as do all of our days, where the pain of missing Bella overwhelms us. I had always hoped that the next family vacation we had would be a celebration of Isobel's successful transplant. Our lives will never be the same and we will always miss our baby but I know that somehow we will have more children and be happy.
The highlight of the trip for me was meeting the White family. I felt like I was hugging old friends when I first met Amy and Klane. They have been so good to Jake and I throughout the last two years! I loved meeting their georgeous girls! Madeline (sp?) was adorable- very friendly and full of life! And I was floored by the similarities between Susannah and Isobel! If I had closed my eyes when she laughed I would have thought that Bella was there! She touched me before I met her and certainly stole my heart when I saw her! It was sort of bitter sweet though, because seeing her made me miss my baby alot! But I am happy to see that she is thriving and learning more everyday! As with alot of post transplant kids- she still has a few issues to resolve and prayers are helpful but she is definatly a miracle. Susannah has come through so much and you can tell that her loving family has been there for her every step of the way!
Amy and Klane- thank you for having us for dinner- I know it was healing for Jake and I!!! My only regret in meeting you is that you live so far away and I wish we had more time together!!
Well, that's it for now, I just wanted to let everyone know that we are home and glad to be back but glad that we were able to go and spend some time as a couple- we needed it!!
And please continue prayers for Conor, it looks like he will be having a second transplant. www.caringbridge.org/canada/conorford And please pray for Noah- he had to be intubated again and needs all of our support. It breaks my heart to think of all he has endured but he is definatly a fighter- I know he'll amaze us all again!! www.caringbridge.org/hi/noah
Also continue to pray for Max- www.Mighty-Max.com he has improved but still needs lots of prayers!!
And there is a little guy named Tony who just started transplant www.caringbridge.org/il/tonythetigre please sign his guestbook and give his parents some support!
Thanks and take care! AND PLEASE SIGN THE GUESTBOOK!!
Monday, September 8, 2003 4:30 PM CDT
Hi everyone! Sorry it has been so long since I last updated! Things have been busy- work is going really well and I am enjoying being there three days a week! I think that is the perfect amount of time for me right now!
Jake and I leave for California on the 17th- I can't wait! We will be in Anaheim for 7days and San Diego for 4. My parents will be staying at my house so if anyone needs to reach me- you can contact them! While we are in San Diego, we will be getting together with the White's. www.caringbridge.org/page/susannah I spoke with Susannah's mom, Amy last week and can't wait to meet in person. They have been of really great support to us through our entire journey!
I also think that the trip will be good for Jake and I- we need some time to just have fun. We need to forget about work, chores, stress and grief and just hang out! I know that we can't hide from our problems but it will be nice to run away for 10 days!!!!!!
That's all for now! Please pray for our friend Max. He is 25 days post transplant and has recently been put on a ventilator. He is showing improvements but needs your prayers! Please visit his website and send his parents your support. www.Mighty-Max.com
And continue your prayers for Conor www.caringbridge.org/canada/conorford
Also Noah www.caringbridge.org/hi/noah
And Nolan www.caringbridge.org/co/nolanramsey
And last but not least Aaron (link at bottom!)
I will write back after our trip!
Love, Cathy
Tuesday, August 26, 2003 11:48 AM CDT
Just a quick update- Conor Ford, a little boy we met in Calgary, has relapsed. Conor has JMML, and his little brother, Aiden was his bone marrow donor. They are headed to Calgary today, where Aiden will give Conor some more of his cells to invoke GVHD. They are hoping that this gets the leukemia cells out of his body once and for all. This news of his relapse is disheartening, I saw the family two weeks ago and they were thrilled to be home and on the road to a normal life. Please pray for them and visit their website www.caringbridge.org/canada/conorford
They could use some words of encouragement right now, so please sign their guestbook and help lift their spirits.
Thank you!
Wednesday, August 20, 2003 10:29 PM CDT
The angels from Quilts of Love have made Bella a memorial quilt. It is beautiful! I added a link below. Please visit it and then sign our guestbook and let me know what you think!
Love,
Cathy
Wednesday, August 20, 2003 10:27 PM CDT
The angels from Quilts of Love have made Bella a memorial quilt. I put a link in below. It is beautiful! Sign our guestbook and let us know what you think!
Love,
Cathy
Sunday, August 17, 2003 11:29 AM CDT
Yesterday I went to Wetaskiwin, a town that is about an hour away from us. I volunteered to shave heads for their annual "Short Cut to the Cure". It was started a six years ago by a family whose son, Brendan, had leukemia. All of the money raised is donated to the Cross Cancer Center. I shaved about ten or twelve heads and also did a few haircuts, on the less brave! It was alot of fun and I got to see the Ford family, we met in Calgary while Isobel and Conor had their BMT's. Conor Ford has leukemia and his baby brother Aiden was his bone marrow donor. They were a perfect match and both are doing very well and are at home! The first shave was done on Brendan and Conor got to do it! Then Conor buzzed his dad's hair off and enjoyed it a little too much!!
It was a fun day. I was touched by a lot of the children that I met in Calgary who were battling cancer. And even though Bella didn't have cancer, she went through the same treatment. So it felt good to do something helpful for people still going through treatment or others who will one day have to go through it! Conor's mom has some pictures on their webpage www.caringbridge.org/canada/conorford
That's all for now! Talk to you soon.
Cathy
Sunday, August 10, 2003 11:03 PM CDT
My sweet Bella went to Heaven four months ago today. In some ways it feels like yesterday and in other ways I feel like it has been years since we had to say goodbye. I miss her more and more everyday. My memories of Bella always make me smile and laugh- she was such a funny kid! But then after a good chuckle, I cry. A sharp pain rips through my heart and leaves a dull ache. I cry because of the things she went through and also because of the things I know she will never get to do. Two and a half years is not enough time for a mother to have her child. I want more time, I want a lifetime but I'd settle for a few minutes, one more kiss, one more laugh, one more hug.
Mama misses you sweet angel and I love you with all of my soul!
Wednesday, July 30, 2003 2:04 PM CDT
Well, I had quite a few adventures over the last few days! Camping was fun- not too rough, just rough enough! Until Sunday afternoon! Jake and I were in the water and decided to race to the other end of the beach. As Jake passed me, I kicked him in the back of his heel and hurt my toe. I started to walk back to the beach and when I reached shallow water looked down and saw that my toe was dis-located. I'm not exagerating when I say that my second toe was pointing toward my baby toe. I'm not sure if I broke it too but I got it taped up and I am now hobbling around. It still hurts but only when I put pressure on one part of my toe! It's amazing how much we use our toes when we walk!!!!
Before we went camping, I got a call from KC Campbell, the director of the RMH in Calgary. She invited Jake and I to Calgary for a gala supper to raise money for the house. Jake couldn't make it so my mom and I drove up there for the night and came back yesterday.
The dinner was a wrap up to the Wayne Gretzky and Friends Golf Tournament to raise funds for the Ronald McDonald Children's Charities. And 25% of the money raised is going to the new Ronald McDonald House in Calgary which will be built on site at the new Children's Hospital.
It was a great day. We had a chance to see a lot of friends who I have been missing a great deal!!! And then got all spiffed up- except my big bandaged toe and flip-flop sandels were the only footwear that I could get my swollen foot into! The dinner and auction raised over half a million dollars!! I felt very honored to be there as a parent representative of the house! The kids from the house that came to the dinner all got autographs from Wayne, himself, and other hockey celebrities... Jerome Iginla, Ryan Smith, Craig Simpson, Kelly Rudy, etc and also from Cassie Campbell, the female hockey star. And from Ian Leggit(the golfer), Silken Laumen (the olympic rower),it was pretty cool!!
Before dinner was served, Eduardo, a twelve year old boy, with lukemia, who had his BMT at the same time as Bella, was asked to read a poem and say grace. There was not a dry eye in the place as he read a poem called, "What Cancer Can't Do". He is going to send me a copy and I will post it for you.
Throughout dinner they had a video playing of parent testimonials about what the house did for them while their children were undergoing treatment. I knew all of the mother and fathers in the video. And of course my mom and I bawled through the whole thing! As did the rest of our table, all parents who had lived at RMH.
Tuesday morning was my birthday and the girls from the house had a cake for me and two of the mothers had gotten me a gift!
I am so glad that I had the opportunity to be a part of such special evening! When Bella died we asked that in lieu of flowers, donations be made to the RMH in Calgary because without it being there, I don't know how we would have made it! It is a wonderful place that allows families be close to their child, bond with others in the same situation and helps them finacially as well!
That's about it- I'm going to automatically insert my CAPS LOCK trick in all of my updates!
SIGN THE GUESTBOOK!!
Love, Cathy
Wednesday, July 23, 2003 10:43 AM CDT
UPDATE: My sister-in-law is letting me sleep in her motorhome while we camp! It has a bathroom, shower, full kitchen!!!! But no T.V so technically I will still be "roughing it"!!! Just wanted to let you know not to worry about me- I'll manage through the night HA!
Hi everyone! It's been a while since I updated last and I don't have much new to report! It's been extremely hot here and we are just trying to enjoy summer.
I have recently heard of two more families who are both in Minnesota starting treatment. The first is Max, I think most of you have heard about him by now but if you haven't please go to www.Mighty-Max.com and wish his family all of your prayers as he starts his chemo. He is a beautiful boy and I know he'll do well.
The other family touched me alot because their daughter is named Bella as well. Her name is actually Isabella but they call her Bella!!!! (obviously, my favorite name!) She is now at day -2 or day-1 and could also use your support.
I also wanted to say congrats to Aaron Athy who is now at home after a successful transplant! I spoke with his mother Trisha just after they were diagnosed- what a trip it has been in those months since! Good Job Aaron, your parents should be proud and I will continue my prayers!!! Please stop by their site too www.caringbridge.org/il/aaronathy
I am going camping this weekend- Camping...I haven't camped in ten or twelve years, since I was a young teenager! If you know me you are laughing right now- me, in a tent with no shower, no bed, no tv. But I think I can pull it off for one night! We will soon find out!
I should go now but I'm once again stealing Trisha Athy's CAPS LOCK TRICK...SIGN THE GUESTBOOK!!! I LOVE TO HEAR FROM YOU ALL!!!!
Love, Cathy
Friday, July 11, 2003 10:02 PM CDT
Douglas Nicoll went to Heaven today to get his Angel Wings. please visit his family and leave them some prayers.
www.caringbridge.org/co/nicollbrothers
Douglas- I never met you but you will be missed. Heaven just gained a very special little boy.
Thursday, July 10, 2003 9:21 AM CDT
Well, today at noon, it will be exactly three months since Isobel became an angel. Three months. On one hand it feels like its only been days since she's died and on the other it feels like years since I've been able to talk to her, to play with her. I miss everything about her. The only thing that I don't miss is watching her get sicker and sicker. My heart still feels like it's been ripped in two when I think about her suffering. I'm so happy that she can be with God now and not feel anything but happiness. No more meds, no more machines, no more living in the hospital and most importantly, no more Hurler's! I hate Hurler's and every other disease that is forced to bear the name MPS.
This has been a hard year for the Hurler family. we lost many babies and learned of many more diagnosis'. And now that they are trying BMT's on Sanfillipo (sp?) Syndrome, we, well I, have personally opened my heart to their stories as well. Please pray for Douglas www.caringbridge.org/co/nicollbrothers Douglas is in the PICU and needs your support. Please send his family words of encouragement. Ever since I found out about Douglas and Cameron, I haven't been able to get over how much Douglas looks like Isobel. When I first looked at their website it actually took me a minute or two to realize that I wasn't looking at a photo of my baby.
Douglas has had such a hard time so please pray!
That's about all for today!
And please SIGN THE GUESTBOOK!!!! I still love to hear from you!
Thursday, July 3, 2003 1:17 PM CDT
Hi everyone! Thanks for all of your encouraging words! I have had a better week! We finished our landscaping and it looks wonderful! We put in a stamped patio with a retaining wall around it and a second tier of grass behind that! Alot of work but we will enjoy it!
I also started work last week and have been very busy already. In case you don't know, I'm a hairstylist. I left a very busy clientele to take care of Bella and now I have to start from scratch to build up my business. But I joined a salon that I used to work at about 5 years ago and it is very busy! I have worked four shifts and have had very little down time while there! That's very promising as it can take up to six months of sitting around waiting for business to come your way. I feel a little money hungry- I was self employed before this and it has been five years since I recieved an actual paycheck!
We have also booked our tickets to Southern California for September 17- we are going for our anniversary! It should be fun and God knows we need it!
I should go- my neice is over and she says that I am "noring" her! I just wanted to let you know about Max, a little boy who was just diagnosed with Hurler's. Max's transplant date is set for July and he will be going to Minnesota. His website is www.Mighty-Max.com His parents could use some words of encouragement, as we all know how nerve racking it is to await transplant! But I know Max will do well!
Love, Cathy
Thursday, June 26, 2003 11:38 AM CDT
I just read on Noah's website about a family with two boys with Sanfillipo Syndrome(sp?). They came to Duke from Greece to get transplants for their boys and lost both of them within a month. I don't know what to say. How can this happen? How will they move on? What ridiculously horrible diseases MPS disorders are. It breaks my heart and makes me so angry, I could scream.
I'm having a hard enough time trying to accept Bella's death, I miss her so much and instead of things getting easier, they are getting harder. I live with a constant wall of tears in my eyes that I try to hold in. And these poor people lost two kids, I am truly heartbroken. I am sorry if I'm rambling but sometimes I wonder what God is doing- how strong does He expect us to be? What a sick, sick world.
Please visit this family who needs prayers so bad and please pray for Jake and I to somehow find more strength because ours is running out.
www.caringbridge.org/nc/koumpourasboys
Sorry,I usually try to sound upbeat but I can't do it today.
Cathy
Tuesday, June 17, 2003
I'm going to try the CAPS LOCK thing again.
PLEASE SIGN THE GUESTBOOK!!
I love hearing from everyone!
I wanted to say a big Congratulations to the Ford family who we got to know at the RMH in Calgary. Kristi and Darren's son had a BMT around two months ago. Conor has JMML and his baby brother Aiden was his donor. The two of them are so similar that special testing had to be performed to determine whose cells were growing in Conor's bone marrow! They recieved the test results today and the news is great! 100iden's cells!
I'm so happy for you guys and Jake and I will pray that he continues to do so well! His website is www.caringbridge.org/canada/conorford please send them your congrats!!
Monday, June 16, 2003
This is just a quick update to tell everyone that Sarah's mom updated her website! Yeah! Sarah is doing well but is schedualed for some major spinal surgery in the fall. Please go to the link below and visit Sarah's page. Just click on "Sarah's Journal" and read the June 13th entry. She could really use some prayers! I know she'll do well and has already been through so much, but extra prayers go a long way!
Friday, June 13, 2003 11:34 AM CDT
I want to say a Happy 1st Birthday to Sarah Byrne, who had her transplant one year ago today!!!!! Way to go Sarah, Judy, Terry and Daniel!!! You all made it!
When a child goes through transplant, it really involves the entire family. Everyone has to make sacrifices and the one year marks signifies a major milestone for everyone.
We started out on the same path, at the same time as the Byrne family (Bella's first anniversary would have been on Wednesday). And so even though this week has been bittersweet for me, I couldn't be more proud of Sarah and feel like I've sort of, in a way been through it with them!
There is a link to Sarah's page below and I think if we all email her mom, she may be forced to give us an update and perhaps new pictures? Judy- I know you're busy but three months without an update leaves all of us Sarah fans wanting more! Ha!
This may be one of my shortest entries yet, but I don't have much more to say! Please keep all of the children going through transplant in your prayers and I'm going to copy Trisha Athy's CAPS LOCK TRICK and say- PLEASE SIGN THE GUESTBOOK!!!!!
Friday, June 6, 2003 7:24 PM CDT
Just thought I'd quickly update everyone. It seems that Noah is doing quite abit better, he was put back on a conventional vent and things are starting to head in the right direction. And Taylor is out of hospital and doing much better, they never found out what she was fighting but seening as things have improved, it doesn't really matter. Thank you God, for taking care of these two!
Our landscaping is coming along, it should be finished in the next few weekends, Jake has been working like a dog! Thanks, honey! And we have decided to go to Southern California in late September for ten or so days. I'm just a big kid at heart and Disneyland and Universal Studios excites me more than a beach vacation. The best part about California is that you get the best of both worlds, lots of things to go to, as well as nice beaches to lay on. We will do a bit of both.The 18th of September is our fourth wedding anniversary and we spent our honeymoon there(see big kid!) so it will be a nice trip. I had always hoped to take Bella there, so it may be a little heartbreaking as well but I planned to do a lot of things with her so I don't think I can look at things that way.
I start work, part time in a few weeks and will probably look into taking some courses in the new year. I don't think I'm capable of retaining any new information for at least six more months!
Last night I attended my first support group for parents who have lost children. My sister, Karey came with me for support (Jake couldn't come but will try to go with me next month) and I think it was helpful. When we first got there, Karey said she was just there for me but the woman running the meeting told her she was welcome to share if she felt she wanted to. And she did say a few words, I think she found it helpful too, after all she lost a loved one in all of this too.
They told me to try at least a few meetings before I decided if it would be helpful or not but I already know it will. I had such a huge network of support in Calgary between the other parents, the hospital staff and the ladies at the Ronald McDonald House and I lost that all when I came home. So I already know that it helps to talk with others who have "been there".
Jake and I also start grief counselling on Tuesday so I'll let you know how that goes!
Talk to you soon, Cathy
Friday, May 30, 2003 10:37 AM CDT
Hi everyone, I have a special prayer request for a little boy named Noah. Noah is a little baby who was diagnosed in January with Krabbe's disease. He is at his Day 100 post-transplant and is in the PICU at Duke and is on an oscilator. He is showing slight improvements but needs lots of prayers to make a full recovery. His website is www.caringbridge.org/hi/noah They could really use some words of encouragement. I know all too well what they are feeling and I know how much I appreciated all the prayers and messages sent to me.
I was thinking about Bella this morning, as I do every morning, noon and night, and I realized that today was exactly a year since she first got her central line put in. I've been told by several people that the "firsts" are always the hardest, first birthday, first mother's day, etc. But because Isobel had been through so much there are a lot of anniversay's to get through. There is the anniversary of when she first started chemo, her first transplant, her first hospital pass, her first day 100, the first time we got to go home for a short time. Then we get into the anniversary of the second time she had to start chemo, her second transplant, second day 100, etc.
I can vividly remember my fears about her central line, when they told me I may have to take her home with it in, I broke down, I was so scared of it. Little did I know how soon it would become part of everyday life. I was terrified of IV's and lines and I had to get over it very quickly. My first dressing change took me close to a half an hour and I felt like my legs were going to give out on me. And poor Bella was hysterical. Fast forward a few weeks and it took me 2, maybe 3 minutes and Bella was handing me the swabs and dressings!!!!! How quickly we adapt!
Also, could everyone pray for Taylor, Bella was her twin and she was having troubles with an infection. Her mom updated her page on Monday so I'm not sure what is going on but prayers may be needed. Actually with these babies going through transplant, prayers are always needed! Her webpage is www.caringbridge.org/mn/taylor
Thanks alot!
That's it for now!
Cathy
Thursday, May 15, 2003 3:58 PM CDT
Everyone is talking about the latest MPS news and I thought I would throw in my two cents!
As most of you know on April 30,2003 the FDA approved Aldurazyme, the enzyme replacement therapy (ERT) for treatment of MPS1 or Hurler syndrome. This is fantastic!Jake and I had looked into ERT when it didn't look like Isobel would find a bone marrow match. Our geneticist, Dr.Chan had a meeting with us in November of 2001 when a collegue of hers Dr.Lorne Clark was in Edmonton for a conference. Dr.Clarke is one of the head researchers in Vancouver, working directly with BioMarin and Genzyme, the makers of Aldurazyme.
For those of you who aren't directly affected by Hurler's, ERT is basically (forgive me if I'm wrong) the only way other than BMT to give these children the enzyme they are missing.
When I met with Dr.Clarke, he was very positive about the future of ERT, except that the enzyme was having trouble crossing the blood/brain barrier. But they were doing research to try to figure out how to solve this. If anyone reading this knows more about this hurdle, let me know. Even still the children who can't have BMT's will benefit from everything to quality of life to quantity!
We all know all to well the risks of BMT and the horrible side effects of all of the anti-rejection drugs. I said to Jake a few months ago that I imagined a world where a child was diagnosed with Hurler Syndrome and they could be 'fixed" at a regular G.P's office. I do feel that we are one huge step closer to that!!!!!!!!
Even though Bella is gone I still feel so hopeful for future chilren with this awful illness. And with medical research being what it is today, hope is definatly out there!!!
As far as Jake and I, we are busy doing our landscaping and trying to plan a holiday. We are going to be starting grief therapy soon and I found out about a support group for parents who've lost children. I can guarantee we will be the only "hurler" parents but I still think it would help to go. I have also been in touch with Carter's mom.
Kristi, I really got a lot of strength from our conversation last week. Unfortunatly and fortunatly there are no other families near us who have gone through the pain of diagnosis, treatment, ICU and then death from Hurler's, I feel right now like you and Jake and Bernie are the only people in the world right now who know exactly how I feel. I am sorry, we had to bond in this way but I'll take it!!!
I have gone on long enough! Oh, yeah, I will be starting work part time in July and hopefully in the fall I can take some part time college courses!
Natalie, from Calgary, could you email me your address? Thanks!
Cathy
Wednesday, May 7, 2003 12:46 AM CDT
It occured to me the other day that I never explained to everyone what happened the day Bella left. It was truly an amazing moment for me because Jake and I knew she was never going to get better and we were in agony trying to decide what to do. My prayers to God were simply, "You make the decision".
We were getting ready to go to the hospital at about 10:30 and they called to say that Isobel's heart rate, blood pressure and oxygen were all dangerously low and that we should get there asap before we missed her. We sped the whole way there and raced trough the halls to ICU but when we got there she had recovered. Her bp was normal, her heart rate was 112, and her O2 was 96%. So they let me hold her for about 45 minutes and she remained stable the whole time. Then I had to get up to go to the bathroom and I asked the doctor if I could go make some phone calls. She said ok but make sure you can hear it if we page you. In order to put Bella back on the bed, we had to unplug her monitor and reconnect it when she was put down. I set her on the bed and started to walk out of the room, they plugged her monitor back in and she had no vital signs. Jake called out to me and I ran and crawled back into bed with her and they said her heart had stopped.
Isobel waited for us and then knew when I put her down that it was time to go. I found this amazing, and reassuring knowing that she made the decision. I just wanted to share this, I think it proves one last time how remarkable my daughter was. I know that all the other angels in Heaven are lucky to be with her right now.
Love, Cathy
Thursday, April 24, 2003 9:03 PM CDT
I thought that I should try to write. I don't know exactly what to say except that things are very difficult right now. We are trying as best we can to live a life without Bella. It's very hard because the only thing we have had in our lives is gone. We devoted 24/7 to Isobel and now I have no idea what to do with my life. I have no job, no responsibility, no doctors appointments and no one depending on me!
But I know that we will heal over time and we will do this because Bella would want us to.
Her life meant so much to so many that my goal now is to make sure that her death means something to!
The last year, I've been obsessed with so many children with hurler's, I read their webpages religiously and have grown to think of them as my family. The last few months have been hard ones for the hurler community but the hope still remains for so many, transplanted or not. I will continue to check on all my hurler babies and the families of those hurler angels! Thank you to everyone affected by this disease for your emails, phone calls and webpages through the last year and the upcoming months. I couldn't have gotten through this without you and I don't think I'd get through the next chapter without you either!
Love, Cathy
Thursday, April 17, 2003 12:44 AM CDT
Jake and I would like to thank everyone who attended Isobel's memorial service on Tuesday. It gave us an overwhelming sense of support and love. The funeral proved to us the love that our daughter helped to spread throughout the community and we can't begin to tell you the pride we feel in knowing how many lives she touched.
Thank you to the people who came from out of town and also the ones who sent cards, flowers, food, gifts and prayers.
Thank you to everyone at the St.Albert Alliance Church for all of your help and support over the last year and at the service.
A special thank you to everyone in Calgary who took such good care of us throughout the last year and especially the last few months. Dr. Victor Lewis, we will never forget you and the guidance that you gave us throughout everything. Louise, Marcel, Dr.Booth, Marcia, Mindy, Lana, Heather, Moira, Bingo-Sherry, Janice, Lisa(plural), Susannah, Joanne, Barb, Darota, Penny (and everyone else on Q!), the ICU doctors, and nurses and all of the volunteers. You all made the worst time in our lives, liveable and I will never forget you or the extraordinary care you gave Bella. I will miss you all and would love at any time to hear from any one of you!
And to the RMH families,good luck and I will miss you! Thank you so much Janice, KC, Angela, and Pat, it meant alot to have you there on Tuesday. KC, I will miss our late night chats!!
Thanks to everyone who signed Isobel's guestbook, I hope you keep doing so!
I will continue to update this page to let you know how we are doing. We will try to go on and use this experience to help others in trying times. Because that's what Bella would want.
Love, Cathy and Jake
Friday, April 11, 2003 11:07 PM CDT
It brings me tremendous pain to tell you that Isobel earned her golden angel wings at noon yesterday. She fought a long, hard battle with great courage and strength but finally decided to join Jesus in Heaven.
Below is a copy of Isobel's Obituary as it is to appear in the April 12, 2003 edition of the Edmonton Journal:
PETERS, Isobel Karey Nadine (Bella)
October 22, 2000 - April 10, 2003
After a lengthy and courageous battle, Baby Isobel went to be with her Lord. She is survived by her loving parents, Jake and Cathy of St. Albert; her grandparents, John and Diane McClure of St.Albert and Helen Peters of Winnipeg.
A Funeral Service will be held on Tuesday, April 15, 2003 at 1:00 p.m. at the St.Albert Alliance Church (1 km west on Villineuve Road). A viewing will be held 1 hour prior to service time. Pastor Dean Kurpjuweit will officiate. Interment in Evergreen Memorial Gardens. A special thanks to Dr. Victor Lewis and all the A.C.H. staff and volunteers. In lieu of flowers, memorials may be made to Ronald McDonald House, 1921 - 28 Street SW, Calgary AB T3E 2H1. To send condolences,visit www.evergreenmemorial.com
Evergreen Funeral Chapel, Cemetery and Cremation Centre. Telephone 472-9019
Wednesday, April 2, 2003 9:15 PM CST
Sorry again for the huge amount of time that I let go by with no word but it is often hard to write.
Isobel has made no improvements as far as her lungs or kidneys but has had a good response to the new GVH drug.
We got some bad news last week and I wasn't sure how much of it I wanted to share because it leaves us with a hard decision to make. Isobel went for an MRI to check on the hydracephalus issue and the results showed that Bella has had massive bleeding in her brain within the last few weeks. They think that her entire right frontal lobe is damaged beyond repair and she has a few smaller ongoing bleeds still happening. We are devastated because that is the main organ that we hoped to save as a result of transplant. They cannot tell the extent of the damage because Bella is still not awake but they can say that she will never be the same little girl who went into ICU.
Please pray that we can make the right choices for Bella and that we can stay strong for her sake.
I apologize if I don't write for a while but I will inform you if anything major happens.
Monday, March 24, 2003 7:53 PM CST
Day +169
Sorry its been so long since I last wrote. A lot of you wrote "no news is good news," but in fact no news is just no news. Isobel remains basically the same. She is still on the ventillator and twice last week she had problems with her lower left lung collapsing and had to go up on some of her settings. She sometimes tries to breathe with the machine, but this takes a lot of effort so some days she does it and some days she is just too tired.
Her billirubin has remained high. This can be caused by the GVH, or it may be from the IV nutrition that they're giving her. They are going to try giving her more forumula through her NJ tube to try and ween her off the TPN and see if this helps. They still feel that a liver biopsy would be unsafe at this time, so we're basically going by trial and error.
Isobel is still on dialysis for 6-7 hours a day. The last few days she's required several blood transfusions (because of her gut, we'll get back to that) which has caused her to retain more fluid and she's quite swollen again. The plan is to keep testing her kidneys and hoping that they will start to remove the fluid on their own. Her urine has shown indications that her kidneys are still capable of regaining full function.
She has continued to have blood in her stools every time they decrease her steroid dose. This causes her hemoglobin to drop and therefore she needs more blood tranfusions, which increases her fluid intake, which brings us full circle back to the kidney issue. So yesterday, Dr. Lewis started her on a new med used to fight GVH. It's called Embryl (sp?). The risk of this is further immunosurpression and they are worried that she'll end up getting an infection, but at this point the GVH needs to come under control.
Bella tries to open her eyes, but like breathing, this is quite taxing on her, so we just take it when we can get it.
Thank you for checking in on Bella and for all your prayers. Please continue to sign the guestbook and I'll try to update you sooner next time.
Love Cathy.
P.S. A friend of ours, Aaron, a little guy with Hurler's who just got his transplant in Minnesota, just found out he is 100% engrafted!!!!!!!!!!!!!!
Way to go, Little Mister!!
His address is www.caringbridge.org/il/aaronathy, if you want to congratulate him.
Sunday, March 16, 2003 2:58 PM CST
Day +162
Well, it's been a long week! Isobel has improved in her breathing, she is taking some breaths now with the machine. And the best part is she opened her eyes slightly last night when we were doing her mouth care!! It was the greatest! But it took alot of work and she is still very weak. But so far all of the neurological testing has shown that her brain is recieving all the messages, she is just too weak to respond with any movements. But if they can get her off of the steroids for her GVH she can get stronger.
The problem is when they try to wean her steroids she always has a GI bleed within 24 hours. So her steroid has been at 18 mg/ 3 times per day and tomorrow they will try to decrease this. If she has another bleed, they will continue to reduce the dose but will add another drug used to treat GVH. To do this though they need to make sure she doesn't have any infection or the new med will cause this to spread. So far her last blood cultures have come back negative for any infections.
Two other issues are:
1) She still is quite reliant on the dialysis machine, when they take her off at night she has still not produced more than 3-5 ml of urine. But the kidney guys told us on Friday that they still believe she can regain full kidney function, it may just take time.
2) They think she may have GVH of her liver now as well. Her bili is up and her enzymes remain normal, this can be caused by a number of things but the most probable is GVh. Dr.Lewis graded it at a 1-2 based on the bili. Because Isobel is so crital, a biopsy is not wise, so they have decided to watch this along with the gut GVh and determine it's response to the steroids over the next few days.
We are really happy to see some improvements but are still asking for everyone's prayers. The road is going to be long but the feeling of every specialist in charge of Bella is that she can make a full recovery. Last week we were very concerned that our efforts would prove futile. But as long as hope is there, and she can come out of this and pick up where she left off, it's all worth it!
Please pray for Bella, remember that this girl has never done what we have expected of her and she somehow rises above all expectations. What a great daughter I have!!!!!!!!!
Love, Cathy
Monday, March 10, 2003 7:37 PM CST
Day +156
Sorry for my delay in updating you but most of the time I am too tired to write.
Isobel has now been on the ventilator for 25 days and has made small improvments but her chances of survival are still small. She was placed back onto the conventional vent a couple of days ago but is still requiring a tremendous amount of support and has not attempted to breath independantly yet. She also developed a small hole in her right lung and they had to put a chest tube in to prevent it from collapsing. Her upper right lung and her lower left are still partially collapsed.
She is still on hemo-dialysis and now her liver looks like it may be next in causing us grief, her bili-rubin (sp?) is quite high and she is very jaundice. They may do an ultrasound tomorrow to determine if there is an obstruction.
And although she has been off the paralysing med for 3 days now she has not moved or responded to anything. She has not opened her eyes or made any effort, as I said, to breath. This may be because of two reasons, it is either neurological or simply the fact that her muscles have atrophied and she has no strength to move. Obviously we are praying for the latter but if it continues we may have to decide how much damage may have occured to her brain. It is still too very early to tell and we may have to wait to see if she can get better before we have an answer.
And to top everything off, she now has an ecoli infection in her blood! Tests are being done to determine if it is an antibiotic resistant infection. Because of Isobel's immune-suppression, she is not capable of fighting something like this on her own.
Please pray for my girl and Jake and I, we miss her so much and want what is best for Isobel.
Also, we lost another friend today. Reese, was a little boy with Hurler's who got his angel wings today for the same thing as Isobel is going through. His parents tried all they could and finally let him go to be with the other beautiful children who have lost their lives to this awful disease. If you want to send prayers to his parents his site is www.caringbridge.org/nc/reesecup
Rest In Peace, Reese, you will be missed!
Wednesday, March 5, 2003 8:36 PM CST
Day +151
Hi there. Alot has happened since I last wrote. About 20 minutes after I updated you last, the doctors phoned and decided to do a Ct scan of Isobel's brain. To do this they had to unhook her from the oscilator and put her on a bagging unit to get to the Ct machine. She handled the bagging quite well and with the help of about 6-7 people, had her scan. The test showed that Bella has Hydrocephalus (sp?) or increased inter-cranial pressure. The spinal fluid that flows through the brain was collecting and pooling outside of the vessels which hold it. As a lot of you know this is very common with Hurler's. The part that they can't figure out is when it started. The last MRI of Isobel's brain was done last April before the first transplant and showed no signs of this, so it could have started months ago or only days ago. For this reason there is no way of knowing, until Bella wakes up if it is causing problems for her. The general consensis from the docs is that it probably won't mean any long term damage, because her body is now producing the enzyme to correct this problem. Please pray that this is the case! They put in a shunt in her head to drain fluid on Sunday night and removed it yesterday because it wasn't draining too much fluid.
The other issue has been her GI bleed, she had a lot of fresh and old blood in her stools, so they did a rectal scope and biopsy yesterday afternoon. The camera showed a very, very sick colon. The mucousa or lining wasn't there at all but because last week's upper Gi scope showed mucousa, it can repair itself if what ever is causing this colitis goes away. We should know tomorrow if it's cause is GVH or the Adeno virus (which has been detected in her stools). They need to know what they are treating before they decide what to do about it. If it is Gvh they will call it a steroid resistant form and will give her a different drug to try to control it. Obviosly the high doses of steroid aren't doing the trick. The reason they need to wait for the biopsy is because the drugs used to treat GVH can cause the Adeno virus to spread to other parts of the body. And the treatment for the virus can cause kidney's to fail.
Which brings me to my next point, Isobel's fluids over the last 8 days have been positive 2 Litres, meaning she has been given 2 litres more than she has peed out and they think her kidneys are only working 1/2 as well as they should be. So, they started her on a type of dialysis today to help her remove the fluid she hasn't been able to get rid of on her own. They also think this may help the lungs because the extra fluid is pooling in the tissue surrounding them making it harder for her lung to fully expand.
She is a very sick little girl, the doctors have given her a 10- 20 % chance of pulling through this. That sounds very bleak but it also means that 20 kids out of 100 come through this. And we are dealing with a kid who is as tough as they make 'em! Please now more than ever continue to pray for healing and strength. And please sign Bella's guestbook, I still tell her everyday who writes and I know she hears me!
Love, Cathy
P.S I am to tired to reread this to tell if it makes sense or if I spelled this right so .... sorry, thta's just the way it is!
Sunday, March 2, 2003 6:35 PM CST
Day +148
Isobel has had a rough week, she had an upper GI scope and biopsy on Wednesday because on Tuesday night she kept dropping in her hemoglobin and after 4 units of blood she still kept losing. The only explaination for this was a bleed somewhere in her GI tract. So they gave her a drug used to constrict blood vessels and it worked, the bleeding seems to have stopped. We should know the biopsy results tomorrow. Then on Thursday she had to go back up on her pressure and oxygen on the oscilator because the extra blood they had given her caused more fluid to get into her lungs.
Later on that day her blood pressure went sky high and her heart rate went very low and this can be a sign of fluid on the brain. To make a long story, they ruled this out the next day but not after giving us a huge scare.
The last two days have been the most "stable" days so far since going to the ICU. So we are praying that maybe this was the breaking point and things will start improving! Please pray that her body doesn't have anything else to contend with so that she can just heal and wake up soon! We miss her so much and hate to see her on these machines.
I also have some bad news. Our friend Carter in Toronto lost his long fight with this awful disease yesterday. We have been following his transplant everyday since he went in and were devastated to hear of this loss. Please pray for stength for his family right now. And if you want, go to his webpage and sign the guestbook to show support. We know how hard he fought and can take comfort only in the fact that he is now an Angel and won't have to endure anymore tests or trouble. God Bless You Carter.
Love, Cathy, Jake and Isobel
Sunday, February 23, 2003 10:00 PM CST
Day +141
Hi everyone, a quick update.. Isobel's urine output has increased to a normal level and that means that her kidney's are working well! Thank God! But she still is retaining fluid due to what they call "third spacing". This means her blood vessels are leaking into the surrounding tissue. She has been doing this for a while and as a result looks very pregnant and her arms are quite swollen. The bloating will take a few weeks to come down and she appears to have stopped swelling further for now.
She has also had quite a few bloody stools. The blood in them is black which means either it is old blood and is just coming out or it is a minor bleed in her upper GI tract or it is her Gvh acting up. To be on the safe side the docs increased her steroids for a couple of days.
Her liver enzymes are stable and they have been able to turn down both her oxygen and her pressure on the oscilator. All good news, in fact the last 24 hours have been the first in 10 days where she has shown improvement in all areas.
Bella has not responded well to quick changes lately so they will be taking everything slow and let her "tell" them how fast to continue weaning her from the oscilator. She is still very critical but any improvements are welcome at this point.
Please continue to pray for good news and healing! I miss seeing my girl awake and smiling, it is so strange to be in the same room as her and not be able to interact with her. The day she opens her eyes will be the happiest for all of us!
Also please continue to pray for Carter (www.caringbridge.org/canada/carter), who also has shown slight improvement. I know his Mom is probably having as hard a time as I am seeing her baby so very, very sick. Pray for strength for her as well!
I will update soon and please sign Bella's guestbook, I tell her everyday who is praying for her to get well and I know she hears me!
Love, Cathy
Friday, February 21, 2003 10:53 PM CST
Day +140
Thanks for all your thoughts and prayers and I'd like to ask for more. Isobel has had some trouble with her kidney function and her liver is also starting to put out signs of malfunction. So far she has responded well to changes in meds to solve these. Please pray that her body can continue to remain stable and that she will once again recover with such strength as she's done in the past.
Also pray for Carter www.caringbridge.org/canada/carter he was also moved to ICU for lung problems and is on the same type of ventilator as Bella. Pray for strength for Kristi, Bernie and Carter
I will keep everyone posted, remember if you don't hear from me, "No news is Good news!"
Love, Cathy
Tuesday, February 18, 2003 9:21 PM CST
Day +137
On Thursday, Bella srarted to have difficulty breathing and a chest xray showed she had pneumonia. She went for a bronchoscopy to find out if it was viral, bacterial or fungal and ended up coming out of the OR to the ICU where she was put on a ventilator. She is under sedation and has been given a drug to "paralyze" her so that her lungs can rest and so she isn't fighting against the machine. Right now they would like the machine to do all the work. So, she is very comfortably resting.
None of the cultures so far have come back positive for anything, so she getting broad spectrum antibiotics and an anti fungal. If it is viral, she will have to fight it on her own but is doing this so far. She improved slightly over the weekend but is now back to pretty much where she started.
I will update when I can but if I don't update you all in the next few days it only means she is the same.
Please pray that she starts to show improvement and can fight this!
Love, Cathy
Wednesday, February 12, 2003 11:52 AM CST
Day +131
Good News! As you know,Isobel has had two tests in the last month to check her engraftment. A bone marrow biopsy and a blood sample both comfirm that is still 100% engrafted with donor cells! This came as a big relief to us because the high doses of immuno-suppressants for prolonged periods can put her graft at risk. Please pray for this number to remain!
More good news!! Isobel's enzyme levels came back at 32%, completely in the normal range!!! Meaning her body is now producing the enzyme she was lacking and thus preventing any further damage from occurring to her organs and even reversing some of the damage that has already been done! Dr.Lewis , as well as Dr.Peters from Minnesota, were very impressed that she had already reached such a normal level and thought this number will more than likely increase over the next few months!!
Even more good news!!! Bella's steroid dose was decreased on Monday and she seems to be improving, her blood pressure, although still high, has come down and she is a little less grumpy. She is still having lots of stools but they don't look like a typical Gvh reaction. They expect her diarrehea to continue for some time, due to the damage that has taken place in her gut. And she has been "tricked" into eating so much healthy food, I'm surprised she hasn't gone into some sort of shock. I'm in St.Albert right now, I came home for a few days to "rest", although my body seems immune to any kind of relaxation lately!! But Jake and his sisters have been making homemade low-sodium soups and stews and casseroles for her. They have to puree and mix the healthy stuff in with her salty canned soup but so far she hasn't noticed! They also made her a high fiber milkshake and tried to give it to her in her sippy cup after she had just had a large drink of milk and I guess mid-gulp she relized she'd been had and had a huge tantrum, complete with tears and arm gestures! But she soon realized if she wanted her precious cheese she would have to have a few sips and she surrendered!
Some sort of bad news.... Dr.Lewis wants us to remain in Calgary until he has seen at least one more biopsy. But he doesn't want to do a biopsy for at least another 3-4 weeks because he doesn't want to disturb her bowel anymore than neccessary. So it looks like we will be residing in C-town for at least one more month, if not longer. I know a month in the scheme of things is not a big deal but I figured out today that we are at Day +246 from her first transplant in June and I really just want to be at home and have this whole thing behind us. The future is very bright but a lot of things need to be worked on before our lives will be considered even close to normal. And I saw Bella and how far she came being at home for even a month, I know the sooner we can get home, the stronger she'll get! I am happy though to have the team here in Calgary handling her Gvh. And she should be outpatient by next week and at least she won't have to live in the hospital anymore.
One last thing, check out the link below to see Bella's new virtual quilt. It was designed specifically for her by a group called Quilts Of Love. It has everything Bella loves in it, Blue's clues, pooh, babies, puppies, you name it. It even has cheese, and represents the things that Bella loves and what gives her strength!
Talk to you soon, keep saying those prayers and keep signing our guestbook, it really makes our day!!!
Love, Cathy
Tuesday, February 4, 2003 9:15 PM CST
Day +123
Hi, again I apologize for being so terrible at updating all of you but my mind feels like it's been steamrolled!
Last Thursday they did a biopsy of Isobel's "gut" and today they told us that they are waiting for the biopsy slides to get here from Edmonton so they can compare the two. Dr.Lewis went to the lab today to "grade" her Gvh himself because the GI guys wanted to wait for the comparison slides. He said her intestines were quite badly damaged and didn't think that the dose of prednisone had done much to help, so they are doubling her dose of steroids. I guess her mucous membrane that lines the bowels wasn't even present in certain areas of the scope and that the bowels were inflammed and "pusy". He said that it is possible that the GVH is under control and that the damage that is left over could take months to heal. We should know soon.
He is phoning a few other docs in Minnesota to decide on the best way to treat this, because the confusing part is that with her intestines so "chewed up" she should be a very sick little girl but Bella is not, she is happy, eating, drinking and playing. She is back to not being able to walk because the steroids make her belly so big and her muscles so weak so she can't support her own weight. They are getting me a physio therapist to work with us while we are here. Before this last flare up she was days away from walking on her own again so I know that this is simply a result of her meds!
To answer the question your all asking, we don't know when we'll be home but not for two weeks at least! The plan from here is to keep her steroids really high for 3-4 days and then decrease the amount based on her stools at that time, then they will re-biopsy her in 10 days or so and then do it again in 2 weeks. I don't think they will have us in Calgary for longer than they have to but no sense going back and forth, we would rather stay and go home for good when it's under control! So probably 2-3 weeks, is my guess.
The other issue we've been dealing with is her blood pressure, it's been really high and so far she has reached the maximum dose for two meds used to deal with it. They are going to start another med tomorrow and hopefully that helps but with the increase in steroids, I'm sure we'll see and increased BP. They asked me to try to limit her sodium intake (start laughing here!). The only foods she will eat are pure salt! But I started on Friday with first offering a low sodium "filler", like a banana or apple or rice krispy square and it worked! She is down to 5-6 goldfish crackers a day and 1-2 pieces of processed cheese, she hasn't even asked for bologna in days!!! For those of you who don't know Bella, 3-4 pieces of was standard for every meal (all 8 of them!), as was at least 2 pieces of bologna! She still asks for the salty foods but we've learned to bargain "you can have some crackers if you finish your banana" type thing and she gets full and then only has room for 2 mini crackers or half a piece of cheese. Most of her cravings and appetite are drug induced so we aren't being that tough with diet but she has been amazingly cooperative and tried a lot of new foods. I'm also adding foods secretly! For example I've added a couple spoonfuls of pureed chicken to her spagetti and she didn't notice!
That's all folks! I promise I'll update sooner than later!
Love You!!
Cathy
P.S Bye Dave, I love and miss you and Bella will miss her Uncle Dee-dees but wants you to have great trip and write lots!!!!!! Love You! Stay Safe and bring us back something nice!!!!!!!!
Sunday, January 26, 2003 at 08:48 PM (CST)
Day + 114
Sorry it's been so long since my last update but it's been a busy week. Bella has done quite well, she has been out on pass almost everyday. The only problem that we've had is that her counts started to drop last week. Prednisone can do this, so since her stools had slowed alot Dr.Lewis decided to start weaning her doses on Friday. But Isobel had quite a few diapers yesterday and ended up losing a kg of weight. So they had to put her dose up last night or she could get quite dehydrated, quite fast. That is a lot of fluid to lose. We were worried about putting up her steroids because her engraftment would be at risk if her counts dropped any more than they already have.
Then this am we got to the hospital and found out her AGC (like a neutrophil count) had dropped to 116 from 1945 the day before. I, of course started crying and thought for sure her engraftment was failing. While we were waiting for the Doctor, our nurse slid in and sheepishly apologized for another nurse's math. Her AGC was up, it was actually 2580, someone had added wrong! I was too relieved that her counts had rose I couldn't be mad, accidents happen!
Tomorrow we will find out the plan for her steroids so I'll write then! Love and miss you all!!!! Please sign the guestbook, it makes my day to get new entries!
Cathy
Tuesday, January 21, 2003 at 08:39 PM (CST)
Day +109
Just a quick update! First of all Happy Birthday Mom!!! I can't believe I have missed yours, Dad's, Karey and Dave's. For those of you who don't know me that well, that would be my entire family! Oh well, next year we won't miss one!!!!
Isobel is doing well and has been out on pass during the last few days. She continues to eat and is very happy! Her albumin and hemoglobin have been dropping slightly and she needed transfusions of both yesterday. Her stools have slowed somewhat but the blood has persisted, so Dr.Lewis is just trying to decide how long to give the steroids a chance to work. He feels the blood may be unrelated to the GVH and perhaps her sutures for her biopsies have torn? We will speak with him further tomorrow. I will write back then and let you all know what's up!!
Talk to you then!
Love, Cathy
Friday, January 17, 2003 at 09:30 PM (CST)
Day +105
Well, we have had quite a week! I'll start at the beginning! Monday, everything went well. Bella handle her biopsies and went home that afternoon. But her diarrehea has continued and at clinic on Thursday she started pooping straight blood. Otherwise she looked great, had no fever, was eating, drinking, "cruising". So they sent us home because the biopsy of her intestines was due back any minute.
We were feeling quite uncomfortable with her stools, so phoned Dr.Lewis in Calgary and asked him if we drove there would he admit her back to Q. And that's what we were thinking of doing. While we were packing Dr. Desai phoned and said results showed a flare up of her GVH and it was already at grade 3 on Monday! So, we came to Calgary right away and are staying at the Ronald McDonald House. We just thought with this serious of problem, Bella was better off where they knew her and Dr.Lewis is the only "Hurler" guy in all of Alberta and we feel really confident in his care.
When we arrived Dr.Lewis said he was relieved to see how unsick she looked! His initial plan was to make her NPO for 3 days and double her dose of steroids and give them through I.V. But decided that since she was very energetic and wanted to eat her would let her. They did double the iv prednisone last night and already her stools have gotten better!
She was very happy to see her "aunties" (all the nurses!) and didn't seem to mind at all being in the hospital! What a kid!
Anyways they expect the steroids to get this under control within the week and will then do a biopsy to reassess. I can't believe what my baby has had to endure over the last 7 months, and still continues to enjoy life. Kids are truly amazing! Please pray that we can get home with her ASAP! And that this is the last flare up we'll have to deal with!
We should know her day 100 tests sometime next week!
One last thing, remember Taylor in Minnesota and Carter in Toronto? I found out this week that they are both 100% engrafted! Way to go guys and Jen and Kristi you are both amazing moms who have been tried, tested and true! I am so happy for you both!
Love, Cathy
Sunday, January 12, 2003 at 08:46 PM (CST)
Day + 100!!!!!!!!
We did it! Day 100! A big day in the life of a transplant patient! It means essentially that we are over the first hurdle, the time when transplant patients are at their most vulnerable to acute GVH, to engraftment failure and to infections. Even though Isobel already had two of the three types of GVH we avoided the liver complications which as I understand it can have the most long term reprocussions.
Tomorrow we are scheduled for day 100 tests. A bone marrow biopsy and enzyme level check. Isobel has still had some diarrehea so they are going to get a biopsy of her intestines while she is under anesthetic. They want to rule out a flare up of her GVH, it is probably an infection of some sort but it is important to identify the problem so that treatment will be properly prescribed!
Please pray that things go well tomorrow and pray for that engraftment number to remain 100% and that, most importantly they find the missing enzyme!!
Please pray for Carter in Toronto, who is coming along! Yeah! But he is still not feeling 100%. And please say a special prayer for Taylor in Minnesota, she is having a rough go of it and it sounds like her poor mother is really worried for her. She is a sweet angel going through her second transplant and looks a lot like Bella (obviously georgeous!!!). Pray that most of all they both engraft but also that they start to feel better! Thanks!
Thanks for all your messages and emails! Please continue to sign the guestbook!
Love,
Cathy, Jake and Bella
Monday, January 06, 2003 at 09:16 PM (CST)
Day +94
NEW PICTURES!!! Check out those cyclosporin eyebrows and the prednisone chin!!!!!
Happy New Year!
Isobel is doing well except for some lingering diarrehea. Dr.Desai, our follow up oncologist from the U of A, sent some samples away today but is pretty sure that the virus is still hanging on in her body. To be on the safe side, he wants to keep her steroid dose the same until the results come back. He doesn't think it's her GVh flaring up but it's better to err on the side of caution! Her diaper area is quite red from the on-going stools but her spirit is strong. Please pray that her diarrehea stops and she can start to feel better.
Other than that she continues to play well, tries to walk around alot and eats fairly well. She would be sleeping great if she didn't poo every few hours. Life is so much better at home, for all of us! I'm sure once Bella starts to feel stronger and get more energy the last year will seem like a dream. Right now it sort of feels like it happened to some one else!
That's it for now. Thanks for checking in and please sign our guestbook!
Love, Cathy, Jake and Bella
Sunday, December 29, 2002 at 07:34 PM (CST)
Day +86
Hi Everyone!
I hope that you are all well! We had a great Christmas yesterday! A few days late but a healthy day so it was great! It's amazing how cautious I have to be right now with flu season in full force. It is very easy to do though, knowing that the end is coming and life will gradually become more "normal" for our family!
We had such a busy homecoming that I never got to write down a few things that I need to say. The first one being a huge Thank you to everyone on Q cluster! I know that some of the nurses are following our site and I can't tell you how great you all made our family feel during such a hard time in our lives. This goes for the nurses, doctors, volunteers, cleaning staff, the list goes on...
You all made a horrible time for us bearable, more comfortable and at times, very enjoyable! I know your special care made Isobel's desire to get well, a lot stronger!
The second group of people I would like to thank are the other "families" who sent words of encouragement, personal triumphs and prayers. I can't tell you how much this helped Jake and I to cope with everything. Just knowing that we weren't alone was a lot of support, especially when facing such a rare thing as Hurler's.
I especially want to thank all of our family and friends, going through transplant #2 required a lot of your time and help and everyone that I asked for support from offered it threefold. Thanks Alot!!! When I think of the year that we just had, part of me is exhausted, part of me is amazed (did we do that?) but the majority of me is thrilled! When Bella was diagnosed we never thought that she would ever find a match, let alone two or that her spirit would be able to survive such an ordeal. But she showed us!!!!!! We know now that whatever the future holds, we can handle it and perhaps come out of it alot stronger!
I also want to mention a couple of other children who need a lot of prayers. The first is Carter, a little boy in Toronto who had his transplant just over a month ago, he has had some GVHD but will be on his way home soon, if he starts to drink more on his own. Please pray that the new year is filled with good news for his family. The other is a little girl, Taylor is in Minnesota having her second transplant. she is having a rough time, pray that things start to turn around and that she also engrafts this time!!!!
Bella is doing great, she loved seeing her Marina and her grandma and grandpa. She is staring to crawl and walk around furniture again! She is so determined, I'm betting she'll tear up the house like normal within a few weeks! She is sleeping very well at night and getting better at nap time. And she learned the most hilarious fake laugh you've ever heard! She keeps Jake and I busy but also keeps us rolling, what a funny kid!
Bella is also eating us out of house and home, actually out of cheese and bologna. The other items on her diet include spagetti, goldfish crackers and chips. We manage to squeeze in a daily yogurt and some canned fruit!
That's all for now, have a great New Year!!!
Love, Cathy, Jake and Isobel
Saturday, December 21, 2002 at 09:04 PM (CST)
Day + 78
Sorry it's been so long since my last update! But things have beeen crazy!! Last Friday, Isobel started to have a lot of diarrehea and ended up being admitted to Q and later that evening she spiked a temp!
The temp lasted for 2 days and stool samples showed she had rotavirus, a stomach bug that can linger for weeks. But by Wednesday her stools had slowed down and she didn't have a fever so we got to go home! Home as in our real home!!!!
If you all remember when we got home after transplant #1, Isobel spiked a temp about an hour after we walked in the door. We ended up at the U of A for ten days on antibiotics for an ecoli infection.
Let's just say history has a way of repeating itself! 10 minutes after we got home, Bella spiked to 38 C! we phoned Dr.Lewis and he said to see how she does overnight. Well, she didn't do! We ended up going back to U of A on Thursday and were discharged this morning!
Bella is doing a lot better, the virus is just lingering. She is still having some stools and we are trying to replace lost fluid by feeding her apple juice through a syringe. Once she is feeling better, we hope she'll start walking around a bit more. Before she got this virus she was really started to move around furniture! She just went to bed, finally in her own crib!!!
Christmas may be quiet this year, my dad and sister are fighting colds and hopefully beat them by Tuesday!! Otherwise, we will just celebrate once everyone is healthy.
Maybe we'll give Ukrainian Christmas a shot!!!
That's all for now, have a wonderful holiday and I will write in the new year! Isobel's day 100 is January 12 and we will be going to the U of A for an MRI and to check enzyme levels, let's pray for a high #! Then shortly after that she'll be getting her central line removed!!! The line has been great but it will be nice not to have to wrap my daughter in Saran wrap to have a bath!
Love you all!
Cathy, Jake and Bella!
Thursday, December 05, 2002 at 10:45 PM (CST)
Day +62
Hi Everyone!
Sorry, its been so long since my last update.
Since I last wrote we've received nothing but good news. I know you've all heard about the engraftment,100%!!!, 100%!!!, 100% !!! .......... Thanks to the Doctors and Nurses at the Calgary Children's Hospital. We couldn't be happier and feel at last as though our nightmare is over. It's been a long year filled with what felt like nothing but disapointment after disapointment; and more bad news following more bad news. But the feeling that we have now makes us forget all the pain.
Isobel has now been given a chance at a more normal, longer life, hopefully filled with nothing but happiness and joy. She is an amazing child, who never ceases to amaze us. We applaud her strenght and deternmination. She is a miracle to us and an inspiration to everyone.
We also received great news yesterday, we will return home on December 18th., just in time to celebrate the Festive Season with our family.
Thanks to everyone for their prayers.
Oh! Please continue with the prayers as Isobel can still use your support.
Bye for now, I will update when I get home.
Love Cathy
P.S. Isobel is becoming a bit of a celebrity being a Wednesday news item on CFRN's evening news and in the Edmonton Journal Today.
Wednesday, November 27, 2002 at 03:14 PM (CST)
GREAT NEWS Everyone!
Bella is 100% engrafted. The doctors were hoping for between 20 - 30%. Bella delivered 70% more.
Bella and Family extend their thanks to all relatives, friends and all our new friends who prayed for her. Our prayers were more than answered.
A special thanks to our mysterious Bone Marrow Donor. Your gift has given quality of life to someone. Although Bella is too young to understand, when older, she will appreciate your heartfelt generosity. God Bless you! Words can't begin to describe our appreciation. Someday we hope to meet you.
Cathy will be adding to this in the near future.
Grandpa
Sunday, November 24, 2002 at 11:53 AM (CST)
Day +50
I can't believe it's day 50! Half way through our stay in Calgary! But Jake spoke with the doctors on Friday and they said if we aren't "Calgary discharged" by Christmas then they will let Bella go home on a 4 day pass for the holidays! Yeah! That of course is provided she continues to do so well. Talk about the best Christmas gift in the whole world, for all of us!
I'm leaving for Calgary in about an hour, so I thought I'd update you before I go. I'm feeling better and have been on antibiotics for over 48 hours, so I won't be contagious anymore. I'm still going to be cautious for a few days. I'll have to wash my hands and no kissing, although it's been 6 months since I've kissed her on the lips!
From what I hear she is doing great! Jake said he's seen a huge improvement over the last few days. She is alot happier, probably because they decreased her steriod dose twice last week and she is eating like a horse. Jake said she had a bowl of Rice Krispies, 2 pieces of cheese, a yogurt and a piece of bologna for breakfast yesterday! She was eating for 45 minutes!
They also got permission from the docs to take her to Red Deer yesterday to see Jake's sister and her family! They have 3 kids (all healthy!) and live on an acreage. She had a blast!
I'm driving down with my friend Tracy and her daughter Addison (both are also healthy!). Addy is 2 months older than Bella and they play together all the time at home. We think it will be good for her to see some familiar kids. I can't wait to see her face when she sees her friend!
That's about it, clinic tomorrow morning and hopefully some test results!
Talk to you soon! Thanks again for your messages and prayers! Please sign the guestbook if you haven't already, we love to hear from everyone!
Love, Cathy
Thursday, November 21, 2002 at 12:47 AM (CST)
Day +47
Hi! I'm sick! I can't believe it, I've been trying so hard to stay healthy but I think the stress and fatigue caught up with me! Last night my throat started to get sore, so I went out and didn't go home until Bella was sleeping. Then first thing this a.m I booked a bus home, phoned Jake's sister Cheri, who lives in Red Deer (1 1/2 hours north of Calgary) and sent Isobel to clinic with Mary. I went to the doctors as soon as I got in and I have a sinus infection, so antibiotics should start to make me feel better soon. I was planning to come home on Friday for 2 days, just to "get away" so it was only a little bit early!
Jake is just finishing up a job tomorrow and then driving to Calgary, so Bella is orphaned for a day with her aunties! Thank God for aunties!!!!! I'm just staying at my mom's for some TLC because Jake is at home and I don't want to expose him to my germs. It was bound to happen some time, you know what they say' "Take care of the caregiver!"
Isobel is doing better each day and has shown us once again how tough she is! We now go to clinic 3 times per week and on Monday, she was amazed at the sight of other children! It has been almost 50 days of complete isolation and I don't think she remembered how much fun kids are! She was laughing and watching excitedly at the others. It was great and once everyone is over their colds at home we think it would help her to have some little visitors at the apartment for a few days. Bella still isn't strong enough for standing on her own too long or walking but she has sort of crawled a little bit. But I think seeing someone her own age would speed up her desire a little more.
Other than that she continues to eat and take her meds and is sleeping fairly well but she has had some diarrehea and she wakes up every few hours to get changed! The doctors think that her bowels are just adjusting to working again and it should resolve.
I'm expecting to know more regarding her engraftment studies this week, so I'll keep you posted! Remember, pray for 100%!!!
Love, Cathy
Friday, November 15, 2002 at 8:50 AM (CST)
Day +42
I just had to add a quick note here, to tell everyone that we had a great overnighter! And might I add that Bella was asleep in her own crib by 8am and slept right through until 6! Then she slept for an hour in with us! What a girl, never underestimate my Bella!
We are at the hospital right now getting our presciptions, going over appointment times for clinic and waiting for our discharge papers!!!!!!!!
Thanks for all the new guestbook entries, keep em comin'!
Love, Cathy
Thursday, November 15, 2002
Day +41
Hi Everyone! Good news, we are going out on an overnight pass. We have to be back at 8 am for bloodwork and then discharge! You heard me, discharge! What a relief it will be, to get out of here! Then we will have to go to the clinic 3 days a week for check ups.
I have been quite naive because Isobel's last transplant didn't affect her at all. I have been thinking that life will instantly be the same as it was in September, but I'm begining to realize the effects that transplant has on these poor little bodies! The road, although engraftment has occured, is going to be difficult. Isobel is very weak and can barely stand on her own, actually she can't stand without help from a table, or hand. And even then it is for very short periods. I'm not sure if this will come quickly and on her own or if it will take months and have to be aided by physio. This will of course, as always depend on Miss Bella! We all know how strong and determined she is and as usual it will be a bonus in the rehabilitation!
Eating and sleeping are other issues that we will have to sort out. Bella has always gone to bed on her own very well but now is quite used to another body being next to her at all times. And unless I want to take 3 hour afternoon naps and go to bed at 8 pm, I have to try to get her back to her own crib. And she is eating very sporatically, but asks for food all day even if she isn't hungry. I am just glad that she is eating but I'm pretty tired preparing 3 different things for each meal, most often to have one bite taken out of each! But I'm sure that this too will come in time.
I don't want to sound like I'm complaining because things have worked out for Bella. I realize the importance of focusing on the big picture and taking things day by day. She will soon begin to produce the enzyme missing from her body and that is all we could have asked for. I am just tired and losing energy fast, the end is so close, it's almost too far away! And as everyone knows it is hard for a control freak to have no control! I just wanted everyone to understand that if we speak on the phone or my emails sound like I'm ungrateful, I'm not. I'm just anxious to get home, see my loved ones, sleep in my bed, talk on the phone, get my hair done, and have our lives back to a state of normalicy! It's been a very abnormal year! But I'm sure even just being in my own apartment will feel like heaven!
I will update you all very soon! Please keep signing our guestbook, I look forward to reading it everyday! I know there are more of you reading this and not letting me know and that's ok but it's nice to know who I'm "talking" to!!!!
Love, Cathy
Monday, November 11, 2002 at 11:52 AM (CST)
Day +38
Hi. I'll start with our Friday pass, which was supposed to be for 4 hours, but pharmacy was late bringing uo Isobel's cyclosporin, so it ended up being only 2 hours. Bella slept for an hour then screamed for 45 minutes and we came back. Saturday's pass was 4 hours but we only stayed out for 2 because Isobel screamed at the top of her lungs the entire time. She cried in the car, in the livingroom, bedroom, on mom's lap, on dad's lap. As soon as we came back to the hospital, she was fine.
I thought "oh-no", my daughter is institutionalized! She only felt comfortable in the familiar hospital. To be honest, I was very upset, not knowing if this would last for weeks or what!
Then yesterday, we got into the car and she didn't scream, Jake said, "At least we had a ten minute car ride, if nothing else!" When we got up to the apartment, Bella cried for about 15 minutes, so we ignored her and kept talking and watching videos. Then she stopped crying, just like that and had a fantastic time!!! She was laughing, playing, she had a bath, she even stood up by herself and took a few steps, something she hasn't been able to do for weeks! I can't tell you how relieved I was to see my Bella feeling the most like her old self then we've seen in a long time!
I know the plan is to have Bella discharged this week but I'm not sure what day this will happen. I do know that all she has to do is take her prednisone and cyclosporin orally and she took both of these meds last transplant and had no problems. So my hope is mid week to be outpatient!!! If I knew how to spell Hallelujah? I would! (I think maybe I just did!)
I will have to find a place near my apartment with internet access so that I can continue to update everyone on a regular basis until we get home. If it takes some time I may ask Karey to do a few from St.Albert, but I will try my best.
Also, we should know the result of Isobel's engraftment studies by the middle of next week. These will show the percentage of donor cells in Isobel's body. Because this was a non-myeloablative transplant, Dr.Lewis doesn't expect the number to be much higher than 30%, but anything over 20% will be considered successful. Then that number should just continue to increase over the next few months. But let's pray for an initial number around 100 %! I will let everyone know as soon as I find out.
That's it for now, I will try to get back to everyone in a few days!
Please pray for Isobel to keep eating, feel stronger and continue to heal!
Love, Cathy
Friday, November 08, 2002 at 03:59 PM (CST)
Day +35
Hi! We are going on a 4 hour pass this afternoon! Bella has been showing great improvement everyday! She has eaten a little bit at every meal and is showing a lot more interest in playing. She is still quite tired and hasn't walked in 3 weeks but I think getting back to the apartment will lift her spirits!
I want to wish my sister a happy birthday. Even though Marina told me it was yesterday, I'm pretty sure it's today. But what do I know over an insistent 3 year old? So, Happy Birthday, Kar! I can't wait to see you next weekend! Isobel is going to be so happy to see her cousin, Rina!
If everything continues it sounds like we may be outpatient by late next week!
I am happy to say that I have nothing else to report!!!!! YEAH! No news is wonderful news when your here!
Have a great weekend, talk to you again Monday!
Love, Cathy
Friday, November 08, 2002 at 03:59 PM (CST)
Day +35
Hi! We are going on a 4 hour pass this afternoon! Bella has been showing great improvement everyday! She has eaten a little bit at every meal and is showing a lot more interest in playing. She is still quite tired and hasn't walked in 3 weeks but I think getting back to the apartment will lift her spirits!
I want to wish my sister a happy birthday. Even though Marina told me it was yesterday, I'm pretty sure it's today. But what do I know over an insistent 3 year old? So, Happy Birthday, Kar! I can't wait to see you next weekend! Isobel is going to be so happy to see her cousin, Rina!
If everything continues it sounds like we may be outpatient by late next week!
I am happy to say that I have nothing else to report!!!!! YEAH! No news is wonderful news when your here!
Have a great weekend, talk to you again Monday!
Love, Cathy
Wednesday, November 06, 2002 at 12:33 PM (CST)
Day +33
Hi Everybody!
The last few days have been pretty uneventful, Isobel is still sleeping a lot of the time. But they are going to be making some changes today! They took her nose tube out, she was quite happy, then they are going to stop her antibiotics, let her have clear fluids orally, and even hep-lock her IV so she can have a bath without her "leash".
We are hoping the combination of all this will "perk" her up a bit. The doctor's think she is doing really well and will start weaning her steroids by 3 mg per dose, starting tomorrow. At first they were going to cut the dose in half every few days but have decided on a more gradual taper.
That's about it, I am going for supper with my Husband tonight, what a treat!
One last thing, I want to say Happy Birthday to a little friend of ours in Michigan named Luke Devolder. Luke is 3 today! A big birthday for a lot of the children living with Hurler's. Without treatment it may have been one of a few, but his BMT was successful and now he will get to have a lot of birthdays! So, Happy Birthday, Luke!!!!!
Take Care! Love, Cathy
Monday, November 04, 2002 at 01:18 PM (CST)
Day +31
Hi All! I am happy to report that Isobel has improved alot! She is still a very sick little girl but with each day we see her strength building and a little more of her wonderful self shining through!
She is going to be given a little bit of "food" through her Ng(nasal gastric) tube and then if her stomach tolerates that we should be able to start feeding her orally, little bits at a time, starting tomorrow.
And her steroid dose will be reduced by half in a couple of days. They don't want to risk weaning her too quickly and having GVH still present, ready to attack.
Her new favorite toys are a box of Kleenex and a pair of latex gloves! She got a million presents for her birthday and she chooses to spent all her awake time with these items! What do you do? Mind you, she is only awake and playing for very short periods, but tries really hard to interact with us. These play times should start getting longer and longer each day.
Thanks for everyone's thoughts and prayers. I know they helped immensly! Kids are so resilent and amazing! After all Bella has gone through, you would expect recovery to take weeks. But if she continues to gain ground this quickly, she should be back to her old self very soon!
Take Care! Love, Cathy
Saturday, November 02, 2002 at 06:31 PM (CST)
Day +29
I will start from Thursday night, they sent Bella for a scope and biopsy of her lower intestines and stomach. They wanted to make sure that they were treating GVH and not an infection. It went well, she had to put under but handled the anesthetic quite well. (She should she's had enough of it in her two years!)
Then yesterday morning, we were called back to the hospital at around 4 am (Jake's sister Helen was with Bella) because Isobel's O2 sats were down and they had put her on oxygen. They thought it was because she had been given so many fluids (she had platetets, RBC's and Albumin) and she had some fluid in her lungs so they gave her lasix and this helped.
Then they sent her for a CT scan of her chest, abdomin and pelvis, again putting her under anesthetic. They let ICU know because that's where they thought she may have to go once she woke up. But she was fine to go back to Q cluster. They said her heart was slightly enlarged and her lungs were showing some fluid left over from the night before so she had an x-ray later and it all looked alright. Her liver was slightly enlarged, but Bella's always had this and her "gut" was inflammed from start to finish. Not good. They upgrade her GVH from stage 3 to +3 or early 4. They said we would just try the steroids for a little bit longer and hope they started to work.
Then at about 5pm Dr. Lewis phoned Jake and said that they had the preliminary results of her biopsy and it showed either the start of GVH or the end of it, but Bella's stool had slowed down and she had no fever, so he thought it was the end of it and we would start to see some improvement. I think Bella heard this because almost 10 minutes after the call, she sat up and started doing actions to the video that was on.
Then she had a pretty good night last night, she slept quite well and has been pretty happy today, she is still not feeling great but all things point to the fact that the steroids have started to do the trick and she is improving!
I think they will keep her on this level of steroids until Monday and then start to slowly decrease the amount. Then we will know if the GVH flares up or not very soon.
I will write tomorrow, thanks again for all your prayers and well wishes. I must admit we really scared but I forgot that we were dealing with Bella! That girl does her own thing and always holds her own!!!
Love, Cathy
Thursday, October 31, 2002 at 03:31 PM (CST)
Day +27
Sorry, the computer here was down last night so I wasn't able to update everyone. Bella had a very uncomfortable night, her stomach was quite bloated and hard, but there is no obstruction. They did an x-ray this morning and said she just had a lot of inflamation and gas. So they put an NG tube in her nose, so that her stomach would drain and give her bowels a rest. This seems to have helped, although as with most two year olds, Bella is not enjoying a tube being stuck through her nose and down her throat.
Dr.Lewis was in and said he wants her steroid dose doubled for 3 days and if it doesn't seem to help he would give her an immunosuppreant called ATG. These are really our only traetment options so I hope the steroids start doing their job. He said they will really be watching her blood pressure and other vitals. If anything else is affected they will probably have to send her to the ICU. Please pray that this doesn't have to happen.
He believes her GVH to be at stage 3, much better than stage 4. But the progression from 3-4 happens a lot faster than stage 2-3, in most cases and she went to stage 3 very fast, so we need to get this under control. Basically each stage gets harder to treat so we obviously don't want any more progression.
The plus side of all this, is we now know for sure she has engrafted with donor cells and in the end we needed this the absolute most, so if we can control the GVHD, we have done IT!
I will keep in touch, once again continue those prayers. They are what is going to help her the most!
Love Cathy
Wednesday, October 30, 2002 at 09:50 AM (CST)
Day +26
I just spoke with Dr.Booth, the pediatrician on Q and they think by the amount of stool that Isobel has Stage 3 or 4 GVHD. This is not good , they will be discussing in rounds how to best treat this. They started IV steroids last night, as well as TPN, now they don't want her eating at all for a few days. She said that decisions regarding Isobel may need to be made hour by hour. A biopsy is still being discussed. I'm not trying to scare anyone, but I'm scared myself. Although she did say that it's not unexpected for her to develop this right now and she said treatment is usually effective once they get the doses and different meds to best suit Bella. Every child is different and they need to be sure that Isobel gets exactly what she needs. I suppose the next few days will tell us more and I may update you all every few hours, but once I know more I'll tell you. In the mean time, pray, pray, pray pray and then pray again. Please!
Love Cathy
Wednesday, October 30, 2002 at 09:50 AM (CST)
Day +26
I just spoke with Dr.Booth, the pediatrician on Q and they think by the amount of stool that Isobel has Stage 3 or 4 GVHD. This is not good , they will be discussing in rounds how to best treat this. They started IV steroids last night, as well as TPN, now they don't want her eating at all for a few days. She said that decisions regarding Isobel may need to be made hour by hour. A biopsy is still being discussed. I'm not trying to scare anyone, but I'm scared myself. Although she did say that it's not unexpected for her to develop this right now and she said treatment is usually effective once they get the doses and different meds to best suit Bella. Every child is different and they need to be sure that Isobel gets exactly what she needs. I suppose the next few days will tell us more and I may update you all every few hours, but once I know more I'll tell you. In the mean time, pray, pray, pray pray and then pray again. Please!
Love Cathy
Tuesday, October 29, 2002 at 04:19 PM (CST)
Bella didn't have a sinus infection after all. They did a CT scan and ruled that out. There is some imflammation of her sinuses, but they do not feel it is an infection. She is vomitting, she has dark stools and is very lethargic. The doctors now believe she has some GVHD of the gut.
A stomach biopsy will be performed tomorrow, however, the doctors do not seem too concerned. In fact, at this point they said that they would rather see some GVHD than an infection. The biopsy will allow them to determine the severity of the GVH and assist them in determining what, if any treatment is required.
Jake is going to stay in Calgary this week. Too much going on to leave right now. My mother may also come up tomorrow p.m.. For now, I ask that everyone else just keep us in their prayers! It looks like the engraftment is occurring, so let GVHD me very minimal. Pray away, Bella needs you to!
We love you all and will keep you posted as we learn more.
Love Cathy, Jake and Bella!
God Bless!
Sunday, October 27, 2002 at 09:59 AM (CST)
Day +23
I only have a few minutes, but I wanted everyone to know that Bella is not feeling well at all! Her diaper area has cleared up , but now we think she has a sinus infection. Her head seems to be really sore around her eyes, and she just cries in pain. We mentioned this to the docs yesterday but they said with no fever it didn't present like a sinus infection. But Isobel had one when she was a baby, with no fever, no other signs other than rubbing her eyes and screaming in pain. The doctors at the U of A didn't think it was either until we convinced them to do an xray of her sinuses. So yesterday they finally agreed to do a CT scan to "rule out" a sinus infection. But Isobel wouldn't lay still, even with the maximum amount of sedation they could give her. Being a Saturday they said we would have to wait until Monday and have them put her under completely.
But yesterday at around 5pm, Bella spiked a temp, so she was put on antibiotics. Then one of the doctors said to my mom, "I think the parents were right, she probably does have a sinus infection."
I would like to add that Dr.Lewis was away and the doctor that saw Bella earlier had never laid eyes on her before!Just goes to show, you never under estimate a Mother (or Father's) intuition!!!!!!
But she is not feeling great, so please pray that she starts to recoup, and starts eating again. She hasn't had a bite in 2 days, but her weight has maintained itself and her electrolytes look good, so no TPN yet!
I'll update you all tomorrow!
Love, Cathy
Wednesday, October 23, 2002 at 12:42 PM (CDT)
Day+19
Good news! We have counts!
Isobel's white blood count is 0.6 and her AGC (ammuno-globulin count?) which is basically her immune system is 246. For other transplant families, I have heard this been called neutrophil (sp?) count as well. But it looks as though maybe Dr.Lewis was right, her body was just reacting to the cells!
We won't know if it's the donor cells there or not for another 3-4 weeks, but I believe she's engrafted. Last transplant, when Isobel's counts started to rise she showed no signs of anything. She never got tired or cranky or had any fevers, so the signs are telling me it's different this time! We still need, now more than ever, a million or so prayers for engraftment and again, no GVHD!
Yesterday was a little more like a "Crappy" Birthday than a Happy Birthday! She wasn't feeling very well and for two days didn't eat a thing. I thought for sure, TPN! But, my girl must have felt my anxiety and last night before bed ate a whole jar of baby food! I tried everything before that, soup, cheese, chips, crackers, oranges, you name it. And on an off chance I offered her a jar of strained bananas and she downed it all! She never ceases to amaze or surprise me!
We sang her birthday song and the hospital preacher came to see her with his guitar and sang to her some more. She enjoyed it a little but was very tired and needed a sleep, so we quickly opened presents before daddy left and that was pretty much her "special" day. I felt a little down, never thought in million years that this is how I would spend my daughter's second birthday, but next year we will make up for it!
That's all for now, we sit and wait and watch and hope and pray. Got that now? Sit then wait then watch then hope then pray!
Love and miss you all! Cathy
Monday, October 21, 2002 at 09:10 PM (CDT)
Day +17
Things have been a little rough on ol' Bella. She didn't sleep a wink Saturday night and was very uncomfortable on Sunday morning. She developed a painful itch on her diaper area and was going mad trying to rub or scratch herself. So, we tried giving her Benadryl, that didn't work, then we tried codiene, didn't work, then morphine, helped a bit. Then they tried Adorax (sp?) and between that and a constant flow of morphine as well as a button to push for a little extra when needed, she was finely comfortable by last evening. They think it's just been really broken down from all the meds, because it doesn't look like it's a yeast infection.
Then today she developed a little rash, a very mild, non-specific rash on her chest and arms, and was very miserable. Then late afternoon she began vomiting and spiked a temp of 38.4C (for any Americans reading this, I don't know the conversions, but anything over 38 degrees is considered a "fever"). So she is on some broad spectrum antibiotics and they drew blood cultures. The Docs think between the rash, the fever and the crankiness, this may mean she is starting to engraft!!!!!! Please pray with all your might that it is!
They said a lot of older kids describe the day they get counts back as feeling really "off" and that would definately describe Bella the last few days, "off". Dr.Lewis said that he can't say for sure that the rash won't start to look like GVHD over the next few days, but said that a small, treatable amount of it would at least give us the indication that those donor cells are still in there!
We will continue to pray that engraftment comes without any complications, but at this point we just want her to engrafted. We can deal with any thing else! We all know how tough Bella is!
She's still eating!! So hopefully she feels well enough tomorrow for her birthday bag of Salt and Vinegar chips! She doesn't want anything sweet right now so we aren't having a cake this year!
Oh, and good news, Jake decided to stay until she settles, so her Daddy will be here for at least part of her birthday!
I will write as soon as anything changes!
Love, Cathy
Saturday, October 19, 2002 at 05:45 PM (CDT)
Day +15
Hi all! We had a pretty good week, Isobel has continued to eat and has had a lot of energy for someone going through a second transplant!
Today she seems a bit "gaggy" and a little cranky but still managed to eat a bit. She still has no counts but I spoke with Dr. Lewis the other day and he said that he doesn't expect much until day 19-21. Because Isobel's cell dose in her new marrow was so high they aren't giving her GCSF, which is a cell booster. So they are letting her cells come up on their own. He also said that he thought that the longer they take, the more likely it's new marrow and not her cells. He said that because her prep was non-myeloablative, that they never thought her counts would bottom out, also a good sign that her own marrow was really suppressed!
Other than that, not much else to say. We are getting ready for Bella's 2nd birthday, which is on Tuesday. Jake won't be here, but we plan to have a little family party next weekend!
That's it! Miss and Love you all!
Cathy and Bella!
Tuesday, October 15, 2002 at 12:11 PM (CDT)
Day +11
Hi, check out Bella's new pictures!
We are doing well and we had a nice weekend! Bella is feeling pretty good overall, a little frustrated at being here though!
She is still eating and drinking, not as much as I'd like but enough to avoid TPN! She has decided to take meds from only Jake and I but at least she's tkaing them!
Not much else to say except that she is the favorite of all the nurses, of course! One nurse, Janice said that Isobel should start giving seminars to the other kids on how to be the perfect patient! Takes after her mother in a lot of ways!
Not to repeat myself , but please keep up the prayers for engraftment and no GVHD. I think on Day 20 they will do a bone marrow harvest to check on donor levels but we won't know those results for a few weeks.
And thanks for all your emails and guestbook entries, they really keep our spirits up, it's nice to know so many people care!
Love, Cathy
Friday, October 11, 2002 at 12:02 PM (CDT)
Day +7
Hi! We had the best night last night! At about 6pm, Jake and Mary came here from Edmonton and Mary brought Bella a huge, stuffed, talking Winnie the Pooh. This thing is twice the size of her and Bella hugged him, kissed him and laughed so hard, she gave herself the hiccups. The whole episode lasted only 15 minutes but made our day, if anyone deserves a good belly laugh, it's my girl!
And tonight Jake and I are going to a hotel for some swimming, hot tubbing and a little R n R. Mary is spending the night and my parents are going to stay all day tomorrow, so we are going to go spend the day in Banff. We didn't really do much for our anniversary this year so we are treating ourselves!
We thought about cooking a turkey tomorrow and having a family thanksgiving but decided that was too much work right now, so we are going out for dinner with my parents!
On a medical note, Bella continues to do well, her appetite seems a little better, there was talk a few days ago of starting TPN (IV nutrition) but so far we have avoided that! Please pray that Bella continues to eat enough!
Her blood pressure seems to be stabilizing and the ultrasound of her kidneys looked normal, a little enlarged but that is expected with all the meds! We had to get a morphine pump, because her diaper area has some break down, not enough to bother her except at diaper changes. So they gave us a pump and we push a button 5 minutes before we change her and no pain!
That'a all I have to say, her counts are still at next to nothing and we expect to see them start to rise in the next 7 - 10 days. Please pray for engraftment and once again, no GVHD!
Happy Thanksgiving!!! (Canadians only!!!!!!!!)
Love Cathy, Bella and Pooh!
Wednesday, October 09, 2002 at 05:41 PM (CDT)
Hello All!
Well, everyone should be quite proud of little Bella! She is handling everything very well. The only concern that the doctor's have is her elevated blood pressure (bp). Today she had an ultrasound of her kidneys to confirm that kidney disfunction wasn't the reason for her high bp. The results showed that her kidneys are inflammed, but the doctors believe that this is normal for someone being administered sooooo many different medications. For now they will simply monitor her bp and perform a few blood and urine tests. Hopefully all will remain precautionary!
Other than that, not much to report! Please continue to pray for Isobel and her new cells! No GVHD!!!!!
Cathy
Saturday, October 05, 2002 at 02:00 PM (CDT)
Day +1
Well, we did it! Isobel recieved her new marrow last night at 1:10 am. It ran over 3 hours. Everything went really well. She recieved a lot of fluids, 450 mls, so at around 4am she needed Lasics? to get rid of some because her heart rate increased and her 02 sats went down. So she also needed a blow-by of oxygen.
But once that was under control all went well!
Amazing that such a selfless act of donating bone marrow just gave my daughter a shot at a normal life! How do you even begin to thank someone for that?
Other than that not much to report. We all need a few more hours of sleep, so I will write tomorrow.
Please pray for engraftment and no GVHD.
Cathy
Thursday, October 03, 2002 at 06:48 PM (CDT)
Day -1
My daughter ROCKS! She had her radiation this morning and was so good! An ambulance picked us up at 7:15 and Isobel enjoyed her ride, she pointed out trees and made "Vvroom, vvroom" sounds at all the cars behind us!
I rock too, I didn't get emotional at all as they "packed" her up. "Packing" is what they do when you require total body radiation. After Bella was asleep, they "packed" her body with sort of a mock tissue, so that she essentially was formed into a box. They do that so that all of the radiation is aborbed evenly, so that one part of her body isn't get more radiation than another. I.e, her head isn't as wide as her body, so it needed more packing or she would have had too much given to it. After they are packed all you can see of her is her oxygen mask. It's very upsetting, Thank God for anesthetic (spelling?)! Any one with claustrophobia out there, don't ever need radiation!
Then she was taken to the actual radiation room that looks like something out of Star Trek. A huge machine was pointed at her body then they radiated her for about 7 minutes each side. Obviously, we were not allowed to stay, but we were able to watch from tv monitors right outside. Next step was to "unpack" her and wait for her to wake up. Followed by another ride back to ACH.
I think I'm going to change our web address to Nursing 101, as I feel like a professor. It's amazing how quickly the abnormal becomes normal! I know a lot more than I ever wanted too!
Then we got a pass and went to the apartment for a family snooze. That's all, Talk to you tomorrow, otherwise known as Day 0!!!!!!!!!!
Love, Cathy
Tuesday, October 01, 2002 at 07:20 PM (CDT)
I feel like we have the most boring webpage on the planet! But I'm pretty sure that under these circumstances, that's a good thing.
Bella continues to do well and we've had a few passes, other than that not much else has been going on. No mouth sores, no vomitting or otherwise to tell you about! I guess our prayers are working, let's keep it up!
Our biggest concern is going to be Graph vs. Host Disease (GVHD) because os the less than perfect match, our risk of this increases. For those of you who don't know what GVHD is, it is when the donor cells attack Isobel's body. I am told most transplant patients, about 80% suffer from mild forms of it and about 10-15% of those have stage 4 GVHD. GVHD can range from mild skin rashes to complete liver failure. Please pray that Isobel isn't affected by this and if she is that it's mild and treatable.
I will write after Bella's radiation on Thursday, so until then...
Love Cathy
And please keep up with the emails- Love them!
Sunday, September 29, 2002 at 07:53 PM (CDT)
We got a pass! A little one, but still a pass. We originally heard that we would get to go from about 1-8 but then they realized that she was due for her cyclosporin at 5pm so we had to come back. Dr. Lewis wanted her to get it I.V because he wants to see her levels go up to a certain amount by Friday.
But, it sounds like we may get 3-4 hour passes until Thursday then once she has had her radiation we will have to stay around the clock. To tell you the truth we have so much stuff to lug around just for a 3 hour venture it kinda exhausts me. But she is so happy to be out we just go.Don't get me wrong, I enjoy it too!
Not much else to report, Jake and I are here by ourselves until Wednesday and then Mary comes for a few days , then I think Karey and Dave are going to come for the transplant on Friday. I can't wait, maybe Jake and I can actually go for lunch or supper. We haven't been together very much because usually I go when he comes and vice versa.
I will talk to you all very soon. I imagine you are all missing me as much as I miss you?!
Love Cathy
Saturday, September 28, 2002 at 07:02 PM (CDT)
Hi guys! Check out our new photos! Today went well, Isobel seems to be adjusting to isolation life once again. Although today was actually our first full day in the hospital. Because Isobel's counts are still up we got to go out on 3-4 hour passes the last two days. But today she was started on Fluderabine, which is a type of chemo drug but it is used primarily for immunosuppression. The type of transplant that Isobel is recieving is not meant to bring her counts to zero again like the last one, but to "retard" her cells so much they don't stand a chance against the new marrow. That's were the term non-myeloablative comes from. So Dr.Lewis said that if we see by tomorrow that Isobel is handling the new chemo well then we might get to go back to our apartment for the afternoon. Now, I think I just heard all of the people from the States and eastern Canada gasp, but Calgary has a different climate that doesn't allow for most fungal infections. So he thought that she would be safe to be in her own space as long as we don't go in the public. And then depending on her counts passes will be determined on a daily basis. We don't mind staying but if it makes no difference to her treatment we will gladly taste the freedom!
Bella got a new babyyesterday and the nurses gave her a little doctors kit so we listen to the baby's heart beat and cover the poor thing with band-aids most of the day. I think the chemo is starting to take most of Bella's energy, she slept a lot of today but her spirits are up and she spoke with "Rena" (her 3 year old cousin Marina) on the phone until Marina informed her that she was very busy!
Love you all, Mom have a great trip and I'll see you on Sunday!
Cathy
Thursday, September 26, 2002 at 03:10 PM (CDT)
Great news, an apartment became available yesterday and we are moving there today! As nice as RMH is we will be better off there, especially when Isobel gets discharged. So that's the goal today is to get set up there and have a "home base".
Isobel had her first dose of Busulfan (chemo)today at 10am and gets it every 12 hours for today and tomorrow. Then on Saturday they start 4 days of another chemo, and I can't recall the name of that, my brain's not at full function right now, so I'll let you know! Next Thursday she will recieve a small amount of total Body Radiation. Most transplant kids get 1200 centrigrade but Isobel's protocol requires only 200, so the short and long term side effects of that should be minimal. Then Friday's the big day! I have been told that her donor is female but that's all I know. They said the marrow might not be given to Bella until midnight and I assume that means that the donor lives very far away, but what do I know? Even though it won't be until midnight they still consider October 4 to be Day 0, so we just keep counting up from there!
Thanks for all your prayers and emails and for signing the guest book- Keep it up, I love hearing from you!
Until next time! Cathy
Tuesday, September 24, 2002 at 09:31 PM (CDT)
Hi Everyone! We are getting settled in at RMH after a long day. We left home at 7 am (Auntie Jenn came with Bella and I) and went to the hospital to be admitted, get blood work and go over the protocol for the transplant. Kinda Scary! But I know that with the support of everyone and all of the prayers being sent to us, that God will take care of us and that Bella will be alright!
Tomorrow they will be doing a echo to see how Bella's ticker is, but it was fine in April, so I hope that no progression has occured. Please pray that this is the case!
After that, we will get out for the day and go back in the evening so that they can give her a drug called Dilantin, to prevent seizures, as one of the chemo drugs can cause them.
Jake is coming tomorrow evening and will stay until after the transplant. Bella will be happy to see him, she already asked for him and we haven't be gone 24 hours!
Then Thursday we start the chemo. I will give you all a shout then to let you know what's up!
Love, Cathy and Isobel
Tuesday, September 24, 2002 at 09:31 PM (CDT)
Hi Everyone! We are getting settled in at RMH after a long day. We left home at 7 am (Auntie Jenn came with Bella and I) and went to the hospital to be admitted, get blood work and go over the protocol for the transplant. Kinda Scary! But I know that with the support of everyone and all of the prayers being sent to us, that God will take care of us and that Bella will be alright!
Tomorrow they will be doing a echo to see how Bella's ticker is, but it was fine in April, so I hope that no progression has occured. Please pray that this is the case!
After that, we will get out for the day and go back in the evening so that they can give her a drug called Dilantin, to prevent seizures, as one of the chemo drugs can cause them.
Jake is coming tomorrow evening and will stay until after the transplant. Bella will be happy to see him, she already asked for him and we haven't be gone 24 hours!
Then Thursday we start the chemo. I will give you all a shout then to let you know what's up!
Love, Cathy and Isobel
Tuesday, September 17, 2002 at 11:36 AM (CDT)
Hi Everyone! I decided to get a new website because I think it will be easier for me to keep people up to date!
Isobel is doing great, a typical toddler complete with new words, non stop "busyness" and tantrums!
As most of you know Isobel's first transplant failed, her bodies own cells recovered instead of the donor cells. Needless to say we were devastated, Isobel's typing is so rare that we were told finding her a match would be like winning the lottery. So naturally when they told us her cord blood transplant wasn't successful, we thought we had blown our one and only shot at helping our baby! But apparently ou